WEBCAST NO. 7
HEALTH AND WELLNESS AMONG PERSONS WITH
DISABILITIES


>> LAUREL:  GOOD AFTERNOON.
THIS IS LAUREL RICHARDS WITH ILRU IN HOUSTON,
AND WE WANT TO WELCOME YOU TO A WEBCAST ON --
AND THIS ONE IS GOING TO ADDRESS HEALTH ISSUES,
IN PARTICULAR HEALTH AND WELLNESS AMONG
PEOPLE WITH DISABILITIES.
BEFORE WE GET STARTED, I WANT TO REMIND YOU
THAT THIS INITIATIVE IS SUPPORTED BY NIDRR, THE
NATIONAL INSTITUTE ON DISABILITY AND
REHABILITATION RESEARCH AND IT'S PART OF THEIR
DESIRE TO HAVE RESEARCH INFORMATION
DISSEMINATED TO THOSE FOLKS WHO ARE NOT
PRIMARILY RESEARCHERS, AND THAT'S LIKE THE
PEOPLE WHO HAVE STAKES IN THE OUTCOMES OF THE
RESEARCH, BUT HAVE THINGS OTHER THAN RESEARCH
AS THEIR MAJOR PREOCCUPATION LIKE ME.

AND I ALSO WANT TO THANK AND ACKNOWLEDGE THE
SUPPORT OF THE RESEARCH INFORMATION FOR
INDEPENDENT LIVING PROJECT.
IT'S JOINTLY RUN BY THE UNIVERSITY OF KANSAS, THE
RESEARCH AND TRAINING CENTER ON INDEPENDENT
LIVING AT THE UNIVERSITY OF KANSAS AND ILRU IN
HOUSTON.
AND ITS WHOLE INITIATIVE IS TO PROVIDE FORUMS BY
WHICH RESEARCH INFORMATION CAN BE ACCESSED BY
PEOPLE IN THE INDEPENDENT LIVING FIELD, THE
DISABILITY RIGHTS FIELD AND THEN ALSO SERVICE
ORGANIZATIONS AS WELL AS RESEARCHERS.

I ALSO WANT TO RECOGNIZE THE SUPPORT THAT'S
PROVIDED BY THE RESEARCH AND TRAINING CENTER
ON HEALTH AND WELLNESS THAT IS LOCATED AT THE
OREGON INSTITUTE ON DISABILITY AND
DEVELOPMENT, AND THAT'S AT THE OREGON HEALTH
SCIENCES UNIVERSITY IN PORTLAND, OREGON.

NOW, I NEED TO POINT OUT A COUPLE OF THINGS
MECHANICALLY ABOUT THE PRESENTATION AS WE GET
STARTED.
NUMBER ONE, YOU'RE GOING TO SEE ON YOUR SCREEN
-- EITHER YOU'RE USING REALPLAYER OR MEDIA
PLAYER, AND IN THE MIDDLE OF THE SECTION WHERE
VIDEO MIGHT BE OTHERWISE, THERE IS SCRIPT AND
THIS IS A REALTIME CAPTIONING OF THE
PRESENTATION.
YOU CAN SEE IT OR IF IT'S A DISTRACTION TO YOU, YOU
CAN MINIMIZE IT BY HITTING THE MINIMIZE BUTTON
AND YOU'LL STILL HEAR THE AUDIO.

THE SECOND THING I WANT TO REMIND YOU IS THAT
THERE WILL BE AN OPPORTUNITY FOR YOU TO ASK
QUESTIONS OR MAKE COMMENTS AND THE WAY YOU
DO THIS IS YOU CAN SEE UNDER STEP 2 ON THE
INSTRUCTIONS ABOUT HOW TO SEND IN A QUESTION
AND YOU HIT -- YOU CLICK ON THE BUTTON THERE OR
THE WORDS AND IT BRINGS UP YOUR MAIL SERVER,
WHETHER IT'S INTERNET -- OUTLOOK EXPRESS OR
EUDORA AND THEN IT'S PREA ADDRESSED TO COME TO
US AND YOU PUT YOUR QUESTION IN THERE AND HIT
SEND AND IT WILL COME TO OUR OFFICE OR BE READ
ON AIR IN REALTIME.

SO THE LAST THING I WANT TO POINT OUT IS IF YOU
HAVE ANY PROBLEMS DURING THIS PRESENTATION,
PLEASE CALL (713)-520-0232 FOR TECHNICAL
ASSISTANCE AND WE'VE GOT PEOPLE ON STAND BY
READY TO ANSWER ANY QUESTIONS THAT YOU MIGHT
HAVE.
ALSO OF COURSE YOU CAN SEE ON THE INSTRUCTION
SECTION THERE IS AN F. A. Q. WHICH HAS FREQUENTLY
ASKED QUESTIONS AND THE ANSWERS THERE.
SO WE THINK YOU'VE GOT YOU COVERED IN TERMS OF
HAVING SOME SORT OF TECHNICAL PROBLEM.
SO RIGHT NOW WE'D LIKE TO INTRODUCE OUR
SUBJECT, THE HEALTH AND WELLNESS AMONG PEOPLE
WITH DISABILITIES.
AND I WANT TO START BY SAYING THAT I FEEL LIKE I'M
THE WRONG PERSON MAKING THIS INTRODUCTION.
MY COLLEAGUE AND FORMER CO-WORKER AT ILRU
PAMELA DOYLE WAS HEAVILY INVOLVED IN THIS
PROJECT, THOUGHT THE WORLD OF THE WORK -- THE
RESEARCH WORK THAT SHE WAS DOING IN
CONJUNCTION WITH MICHELLE AND LAURIE AND THE
OTHER PEOPLE, SHARON FINNEY ON OUR STAFF AND
THOUGHT IT WAS EXTREMELY IMPORTANT AND WAS
VERY, VERY KEEN ON IT.
I'M SORRY SHE'S NOT HERE TO MAKE THIS
INTRODUCTION BUT SHE WENT INTO CORPORATE
AMERICA AND IS MAKING A LIVING WHERE THERE IS
REAL MONEY AND LIVING IN SOME SMALL TOWN IN
MID TEXAS.

SO WITH THAT SAID, AND WITH ME STANDING IN FOR
PAMELA DAUTEL, I WISH TO WELCOME MICHELLE
PUTNAM WHO IS NOW AT THE UNIVERSITY OF
WASHINGTON IN ST. LOUIS AND LAURIE POWERS WHO
IS WITH THE OREGON HEALTH SCIENCE UNIVERSITY.
AND MICHELLE, I BELIEVE I'LL TURN IT OVER TO YOU
NOW.

>> MICHELLE:  THANKS, LAUREL.
I'M GOING TO START BY BRIEFLY REITERATING WHERE
THE STUDY IS FROM.
THIS REEFRM STUDY WAS CONDUCTED AT THE
REHABILITATION RESEARCH TRAINING CENTER FOR
HEALTH AND WELLNESS THAT'S LOCATED AT OREGON
HEALTHS AND SCIENCES UNIVERSITY IN PORTLAND,
OREGON.
OUR CENTER THERE PARTNERS WITH SEVERAL OTHER
ORGANIZATIONS AROUND THE COUNTRY.
FOR THIS STUDY, THE INVESTIGATION ORES WERE
MYSELF AND LAURIE POUR WASER AND SARAH
GEENAN.
AND MARSHA SAXTON AND AT ILRU IN HOUSTON, IT
WAS SHARON FINNEY AND PAMELA DAUTEL.
SO ALTHOUGH EVERYONE CAN'T BE ON THIS WEBCAST,
WE WANT TO SAY THAT THEY WERE A VERY
IMPORTANT PART OF OUR STUDY AND THIS PRODUCT
HAS REALLY HAPPENED BECAUSE WE WERE ABLE TO
TALK TO PEOPLE ALL OVER THE COUNTRY ABOUT
THEIR PERCEPTIONS OF HEALTH AND WELLNESS AND
THEIR DEFINITIONS.
SO WE REALLY FEEL THAT THIS IS A SIGNIFICANT
STUDY.
WE'VE GOT A LOT OF PEOPLE ACROSS THE COUNTRY
REPRESENTED IN THAT.

I'M GOING TO GIVE YOU A LITTLE BIT OF THE FORMAT
FOR THIS PRESENTATION.
WE'LL PRESENT BACKGROUND ON HEALTH AND
WELLNESS AND STRATEGIES AND DISCUSS THE
PURPOSE AND METHOD OF OUR STUDY.
AFTER WE DO THAT WE'LL STOP AND TAKE ANY
QUESTIONS YOU MIGHT HAVE AT THAT POINT.
AFTER THAT WE'LL CONTINUE ON WITH OUR
PRESENTATION AND GIVE YOU THE RESULTS OF OUR
STUDY AND THE IMPLICATIONS THAT WE BELIEVE
THESE RESULTS HAVE AND THEN WE'LL TAKE YOUR
QUESTIONS AGAIN.
AND AT THAT TIME IF YOU HAVE ANY QUESTIONS
ABOUT THE FIRST HALF OF THE STUDY WE DESCRIBED,
WE'LL BE HAPPY TO TAKE THOSE AS WELL.
WE REALLY ENCOURAGE YOU TO ENGAGE US IN
DISCUSSION ABOUT OUR STUDY.
WE'RE VERY INTERESTED TO HEAR YOUR THOUGHTS
AN OPINIONS ON OUR WORK, AND WE'RE HAPPY TO
TAKE ANY AND ALL QUESTIONS YOU MAY HAVE
ABOUT IT.
WE MAY NOT BE ABLE TO ANSWER ALL YOUR
QUESTIONS, BUT WE'LL REALLY TRY.
WE REALLY FEEL THAT WE'VE DONE THIS STUDY WITH
A MINDFUL APPROACH IN WANTING TO REALLY HEAR
WHAT PEOPLE WITH DISABILITIES HAVE AND PEOPLE
WHO WORK IN THE HEALTH AND WELLNESS
PROFESSION AND FOR US ALTHOUGH WE'VE
CONCLUDED THIS PART OF THE STUDY, IT'S REALLY AN
ONGOING THING WE'RE INTERESTED IN THE EVOLUTION
OF THESE IDEAS THAT WE HAVE DISCOVERED HERE.

>> MICHELLE:  I WANT TO INTERJECT REAL QUICKLY.
I'M GETTING SIGNALS FROM THE CAPTIONER ASKING IF
YOU CAN SLOW DOWN A LITTLE BIT SO SHE CAN KEEP
UP WITH YOU.

>> MICHELLE:  SURE.

>> RACHEL:  HOPEFULLY LAURIE HEARD THAT, TOO.

>> MICHELLE:  I'M GOING TO START BY TALKING
BRIEFLY ABOUT WHAT WE KNEW ABOUT HEALTH AND
WELLNESS DEFINITIONS AND STRATEGIES RELATING TO
LIVING WITH DISABILITY BEFORE WE BEGAN THE
STUDY.

WE CAME INTO THE STUDY KNOWING SEVERAL THINGS
ABOUT HEALTH AND WELLNESS FOR PEOPLE WITH
DISABILITIES.
FIRST, WE KNEW THAT HEALTH AND WELLNESS WERE
NOT TERMS COMMONLY ASSOCIATED WITH DISABILITY
OR PEOPLE LIVING WITH DISABILITY.
WHEN DISABILITY OR PHYSICAL IMPAIRMENT IS
THOUGHT TO BE STRICTLY AN ILLNESS OR ILLNESS
RELATED, HAVING GOOD HEALTH OR FEELING WELL
DOESN'T SIT VERY EASILY INTO THIS ILLNESS MODEL,
AND WE KNOW THAT INDIVIDUALS AND
PROFESSIONALS WHO WORK IN THE HEALTH AND
WELLNESS FIELD OFTEN DO NOT CONSIDER IT POSSIBLE
FOR PEOPLE WITH DISABILITIES TO BE HEALTHY AND
WELL.

SECOND, WE ENTERED THE STUDY QUESTIONING THESE
BELIEFS ABOUT HEALTH AND WELLNESS KNOWING
THAT WHEN DISABILITY IS VIEWED CONTEXTUALLY,
THAT ASSUMPTIONS ABOUT THE ABILITY TO BE
HEALTHY AND WELL CHANGE.
AND WE KNEW THAT SOME PEOPLE LIVING WITH
DISABILITY BELIEVE THEY ARE VERY HEALTHY AND
WELL.
OTHERS SEEK TO ACHIEVE HIGHER LEVELS OF HEALTH
AND WELLNESS SO WE WANTED TO BREAK OUT OF THIS
ILLNESS MODEL THAT LIMITS OUR THINKING ABOUT
HEALTH AND WELLNESS AND MORE BROADLY LOOK AT
HOW PEOPLE WITH DISABILITIES EXPERIENCE HEALTH
AND WELLNESS WITHIN THE CONTEXT OF THEIR DAY
TO DAY LIVES.

THIRD, WE KNEW THAT HANDFUL OF PRELIMINARY
STUDIES THAT PEOPLE WITH DAYS DISABILITIES, FROM
A HANDFUL OF PRELIMINARY STUDIES THAT PEOPLE
WITH DISABILITIES OFTEN HAVE DIFFERENT
DEFINITIONS OF HEALTH AND WELLNESS AND WE
KNEW THAT INCLUDED IN THOSE DEFINITIONS WERE
ISSUES RELATING TO HOW THEY FELT PHYSICALLY,
WHAT THEIR SOCIAL LIFE WAS LIKE, WHAT THE
OPPORTUNITIES WERE TO ENGAGE IN HEALTH AND
WELLNESS PROMOTION ACTIVITIES.

REALLY THEN COMING INTO THE STUDY WE HAD A
CERTAIN SET OF BELIEFS.
WE HAD THE BELIEF THAT PEOPLE WITH DAYS BUILTS
COULD BE HEALTHY AND WELL.
THAT THEIR DEFINITIONS OF HEALTH AND WELLNESS
SEEM TO BE COMPLEX AND IT WAS IMPORTANT TO
UNDERSTAND HOW PEOPLE THOUGHT ABOUT HEALTH
AND WELLNESS AND WHAT THEY THOUGHT HELPED
PROMOTE THEIR HEALTH AND WELLNESS OR WHAT
GOT IN THE WAY.
AND WE KNEW THAT THE FIRST STEP OR WE BELIEVED
THAT THE FIRST STEP TO FINDING WAYS TO IMPROVE
THE OVERALL LEVEL OF HEALTH AND WELLNESS OF
PEOPLE LIVING WITH DISABILITIES WAS TO TRY TO
UNDERSTAND TWO BASIC THINGS:  A., WHAT THESE
CONCEPTS MEAN TO INDIVIDUALS LIVING WITH
DISABILITY AND,B, WHAT FACTORS THEY BELIEVE
HELPED TO PROMOTE THEIR HEALTH AND WELLNESS
AND WHAT FACTORS ACT AS BARRIERS IN A KHEEFLG
HEALTH AND WELLNESS.
SO WITH THAT BACKGROUND I'M GOING TO TURN IT
OVER TO LAURIE TO KIND OF GIVE YOU THE SETUP FOR
OUR STUDY.


>> LAURIE:  THANKS, MICHELLE.
AS MICHELLE INDICATED, THE STUDY WAS ABOUT
REALLY TRYING TO UNDERSTAND IN MORE DETAIL
HOW PEOPLE WITH DISABILITIES DEFINE HEALTH AND
WELLNESS, AND THE FACILITATORS AND BARRIERS
THAT THEY SEE TO PROMOTING THEIR HEALTH AND
WELLNESS.
AND THEN FINALLY, WHAT NEEDS TO BE DONE IN
ORDER TO MAKE IT EASIER FOR FOLKS WITH
DISABILITIES TO BE ABLE TO STAY HEALTHY AND
WELL.

AND WHAT WE DID WAS CONDUCT 18 FOCUS GROUPS,
AND THOSE FOCUS GROUPS INVOLVED 99 PEOPLE.
AND AS MICHELLE INDICATED, WE HAD TEAMS IN
PORTLAND, OREGON, OAKLAND, CALIFORNIA, AND
HOUSTON, TEXAS.
ALTHOUGH WE HAD ONE GROUP THAT WAS ACTUALLY
CONDUCTED IN ASSOCIATION WITH A NATIVE
AMERICAN CONFERENCE SO THAT WASN'T CONDUCTED
IN ONE OF THOSE THREE CITIES.
SO PRETTY MUCH EVERYBODY ELSE WAS IN THOSE
GENERAL AREAS.

THE PARTICIPANTS WERE RECRUITED PRETLY
BROADLY.
WE TRIED HARD TO GET BEYOND THE TRADITIONAL
FOLKS THAT YOU MIGHT JUST EASILY FIND.
WE CERTAINLY INTERVIEWED PEOPLE WHO WERE
CONNECTED WITH INDEPENDENT LIVING CENTERS AND
WHO WERE CONNECTED WITH VARIOUS DISABILITY
ORGANIZATIONS LIKE, SAY, THE MS SOCIETY, BUT WE
ALSO DID QUITE A BIT OF GOING OUT TO CHURCHES
AND COMMUNITY ORGANIZATIONS, FINDING SPORTS
GROUPS, A VARIETY OF THINGS TO TRY TO MAKE SURE
WE GOT A CROSS SECTION OF PEOPLE.
THE 99 PARTICIPANTS ACTUALLY WERE PRETTY
NICELY BALANCED.
THE AVERAGE AGE OF THE PARTICIPANTS WAS 47,
WHICH WE WERE ACTUALLY PRETTY HAPPY WITH
BECAUSE THAT'S KIND OF MIDDLE AGE AND THERE IS
ACTUALLY NOT A LOT KNOWN.
THERE IS TYPICALLY NOT A LOT OF RESEARCH DONE IN
THAT AREA AND ESPECIALLY KNOWING THAT 28
PERCENT OF THE PEOPLE WE INTERVIEWED OR WHO
WERE IN THE FOCUS GROUPS WERE 55 OR OLDER.
SO THAT GAVE US A CHANCE TO GET A LITTLE BIT OF
THAT PERSPECTIVE.

53 PERCENT OF OUR PARTICIPANTS WERE CAUCASIAN
OR ANGLO, HOWEVER YOU'D LIKE TO LABEL THAT, AND
THE REMAINING WERE CULTURALLY DIVERSE.
14 PERCENT WERE HISPANIC, 13 PERCENT WERE
AFRICAN AMERICAN, 10 PERCENT WERE NATIVE
AMERICAN OR AMERICAN INDIAN, 2 PERCENT WERE
ASIAN, 1 PERCENT WERE PACIFIC ISLANDER, AND 7
PERCENT OF THE PEOPLE IDENTIFIED THEMSELVES AS
ANOTHER ETHNICITY OR CULTURE.

WITH RESPECT TO DISABILITY, WE WERE FOCUSING IN
THIS STUDY ON FIVE MAJOR DISABILITY GROUPS, AND
THE REASON THESE GROUPS ARE PICKED IS BECAUSE
THEY ARE THE GROUPS THAT THE NATIONAL
INSTITUTE ON DISABILITY REHAB AND RESEARCH
WANTS THE RESEARCH AND TRAINING CENTER TO BE
LEARNING ABOUT IN PARTICULAR.

SO 14 PERCENT OF OUR PARTICIPANTS HAD POST POLIO,
18 PERCENT HAD CEREBRAL PALSY, 20 PERCENT HAD
SPINAL CORD INJURY, 23 PERCENT HAD MULTIPLE
SCLEROSIS, 11 PERCENT HAD SOME KIND OF AN
AMPUTATION, AND THEN ABOUT 13 PERCENT OF OUR
OTHER PARTICIPANTS HAD OTHER KIND OF
DISABILITIES LIKE M.D. WORDS OR A. L. S. OR SPINA
BIFIDA OR ARTHRITIS AND THE REASON THEY WERE
INVOLVED IN THE STUDY IS BECAUSE THEY MAY NOT
HAVE HAD ONE OF THOSE FIVE DISABILITIES THAT I
JUST NAMED, BUT THE KINDS OF FUNCTIONAL
CHALLENGES THAT THEY EXPERIENCE AS A RESULT OF
THE DISABILITIES THAT THEY DID HAVE WERE VERY
SIMILAR.
SO WE WANTED TO BE AS INCLUSIVE AS WE COULD
WITH THE STUDY.

NOW, THERE WERE A SET OF QUESTIONS THAT WE
ASKED IN EACH OF THE FOCUS GROUPS, AND THEY
FOLLOWED WHAT WE SAID WERE THE ORIGINAL
QUESTIONS FOR THE RESEARCH.
ONE OF THE QUESTIONS WAS WHAT DOES HEALTH AND
WELLNESS MEAN TO YOU, TRYING TO UNDERSTAND
HOW PEOPLE DEFINE IT.
AND WE ASKED PEOPLE HOW DO YOU KNOW YOU'RE
HEALTHY AND WELL?
HOW DO YOU FEEL?
WHAT IS YOUR LIFE LIKE?
TO WHAT EXTENT IS HEALTH AND WELLNESS
DIFFERENT WHEN YOU HAVE A DISABILITY?
WE ASKED PEOPLE TO TELL US ABOUT SPECIFIC THINGS
THEY DO IN THEIR LIVES TO BE HEALTHY OR WELL,
WHAT TRICKS OR STRATEGIES THEY HAVE LEARNED
TO STAY HEALTHY OR WELL.

AND WE ASKED THEM BASED ON THEIR EXPERIENCE
WHAT FACTORS THEY THOUGHT INFLUENCED BEING
HEALTHY AND WELL, WHAT HELPED, WHAT GOT IN THE
WAY?
WE ASKED THEM TO SHARE EXAMPLES FROM THEIR
LIVE.

AND THEN FINALLY, WE ASKED THEM WHETHER THE
MOST IMPORTANT CHANGES THAT NEED TO HAPPEN IN
ORDER FOR PEOPLE WITH DISABILITIES TO BE HEALTHY
AND WELL.
THAT COULD BE ANYTHING FROM THEIR BEHAVIOR TO
SUPPORT SERVICES POLICIES, WHATEVER THEY MIGHT
COME UP WITH.

NOW, FOR EACH OF THESE FOCUS GROUPS, WE ASKED
THESE QUESTIONS.
WE JUST HAD VERY OPEN-ENDED FACILITATED
DISCUSSIONS.
SO WE DIDN'T DIRECT PEOPLE'S ANSWERS.
WE REALLY WENT -- WE FOLLOWED ALONG WITH
WHAT THE PARTICIPANTS WERE SAYING AND PURSUED
THOSE AREAS THAT THEY WERE MOST INTERESTED IN
TALKING ABOUT.
AND WE TRANSCRIBED EACH OF THOSE SESSIONS.
WE TAPED THEM AND THEN TRANSCRIBED THEM
VERBATIM AND THEN DIFFERENT MEMBERS OF THE
TEAM WERE ASSIGNED TO READ THE DIFFERENT
TRANSCRIPTS.
AND WHAT WE DID WAS WE CODED THE TRANSCRIPTS
INTO CATEGORIES OR THEMES.
SO WE TOOK A PARTICULAR THEME, SAY IT MIGHT BE
ACCESSIBILITY AND WHENEVER WE SAW THAT, WE
CODED THAT PARTICULAR -- IT MIGHT BE A SENTENCE
OR A PHRASE OR A PARAGRAPH THAT TALKED ABOUT
ACCESSIBILITY.
WE GAVE IT THAT CODE.
AND SO AS WE WENT THROUGH THE TRANSCRIPTS, WE
GRADUALLY CAME UP WITH A SET OF CODES.
AND YOU MIGHT GUESS, WE NEEDED TO TALK WITH
ONE ANOTHER PRETTY FREQUENTLY AND WE WENT
OVER THE DIFFERENT CODES WE WERE COMING UP
WITH.
WE CHECKED ON ONE ANOTHER'S CODES TO SEE IF WE
WOULD ASSIGN THE SAME CODE TO THE SAME
SENTENCE OR PHRASE, AND THEN THROUGHOUT THIS
WHOLE PROCESS, WE CAME UP WITH A FINAL SET OF
CODES OR THEMES THAT WE THOUGHT WERE THE
MOST IMPORTANT.
AND IT'S THAT SET OF THEMES THAT THE RESULTS ARE
BASED ON.

I THINK WHAT I'LL DO IS JUST STOP THERE FOR A
MINUTE AND GIVE A CHANCE FOR ANY QUESTIONS
ABOUT THE BACKGROUND OR ABOUT THE METHOD
THAT WE USED TO DO THE FOCUS GROUPS OR JUST TO
ANALYZE THE DATA.

>> RACHEL:  OKAY, GREAT.
THE QUESTIONS ARE STREAMING IN.
OKAY, ONE QUESTION HAS TO DO WITH WHETHER
SEXUALITY WAS A PART OF THE QUESTION BECAUSE
MANY PEOPLE CONSIDER SEXUALITY TO BE A BIG PART
OF THE HEALTH AND WELLNESS PICTURE.
WHAT DID YOUR HEALTH WARRIORS HAVE TO SAY
ABOUT THIS TOPIC?

>> LAURIE:  THAT IS A GREAT QUESTION, AND
ACTUALLY IT'S GOOD YOU'RE ASKING THAT BECAUSE
ONE OF THE CHALLENGES WITH DOING FOCUS GROUPS
OR DOING INTERVIEWS IS YOU WANT TO GET PEOPLE
TO TALK ABOUT PARTICULAR AREAS, BUT YOU DON'T
NECESSARILY WANT TO TELL THEM AHEAD OF TIME
WHAT THOSE AREAS ARE BECAUSE YOU WANT TO SEE
WHAT THEY'RE GOING ON COME UP WITH.
YOU REALLY WANT THE RESULTS TO BE DRIVEN BY
WHAT PEOPLE ARE SAYING, NOT WHAT YOU THINK
THEY SHOULD SAY.

SO IN THE QUESTIONS, WE TRIED VERY HARD NOT TO
THROW OUT SPECIFIC TOPICS LIKE SEXUALITY OR
ACCESSIBILITY OR ANYTHING SPECIFIC, BUT REALLY
TO KEEP THE QUESTIONS GENERAL, AND THEN TO SEE
WHAT'S MERGED.
NOW, WHAT YOU'LL HEAR WHEN MICHELLE TALKS
ABOUT THE RESULTS IS THAT IS THERLY SEXUALITY
WAS ONE OF THE TOPICS THAT WAS BROUGHT UP BY
SEVERAL FOLKS.
I THINK IT'S FAIR TO SAY MORE BY MEN THAN WOMEN
BUT I'LL SAVE THAT FOR MICHELLE.
SHE'S GOING TO TALK ABOUT THE RESULTS.


>> RACHEL:  OKAY, WE HAVE ANOTHER QUESTION
HERE WHICH PART OF IT I THINK YOU'VE ANSWERED,
AND THE SECOND HALF I'LL ASK AND IF IT'S A LITTLE
PREMATURE YOU CAN JUST LET US KNOW THAT AND
ANSWER IT DOWN THE LINE.

>> LAURIE:  SURE.

>> RACHEL:  THIS PERSON WANTED TO KNOW ABOUT
THE FOCUS GROUPS WHICH YOU'VE DONE SINCE HE
E-MAILED THIS IN AND HE'S ALSO INTERESTED TO
KNOW AS MEMBERS OF MINORITIES WITH DISABILITIES
IN THE FOCUS GROUPS HAD DIFFERENT RESPONSES
ABOUT THEIR BARRIERS THAN PEOPLE WHO WERE NOT
FROM MINORITY GROUPS?

>> LAURIE:  RIGHT.
WHAT I THINK I'LL DO IS I THINK WE DID PROBABLY
ANSWER THE FIRST PART OF THAT, BUT I THINK THE
SECOND PART I'M GOING TO TALK A LITTLE BIT ABOUT
KIND OF THE WAY WE APPROACHED UNDERSTANDING
WHAT MINORITY PARTICIPANTS MIGHT BE SAYING AND
THEN MICHELLE IS GOING TO TALK A LITTLE BIT ABOUT
WHAT THEY ACTUALLY HAD TO SAY.

AND THE IMPORTANT DISTINCTION WITH THE WAY WE
APPROACHED IT IS THAT WE DIDN'T REALLY
SPECIFICALLY SET UP THE STUDY TO TRY TO
UNDERSTAND WHAT THE DIFFERENCES MIGHT BE
BETWEEN FOLKS WHO WERE CAUCASIAN AND FOLKS
WHO WERE MEMBERS OF MINORITY GROUPS.
HOWEVER, WE DID FOR EACH OF THE MAJOR MINORITY
GROUPS ATTEMPT TO HAVE AT LEAST ONE FOCUS
GROUP WHERE THE MAJORITY OR ALL OF THE
PARTICIPANTS WERE FROM THAT GROUP.
AND THE REASON WE DID THAT IS BECAUSE WE
THOUGHT THAT THAT MIGHT INCREASE THE
POTENTIAL FOR PEOPLE IN THE GROUP TO FEEL
COMFORTABLE IN BRINGING UP ETHNIC OR CULTURAL
ISSUES.
AND SO THAT WAS ONE THING THAT WE DID.

WE ALSO THOUGH DIDN'T -- WE DIDN'T SPECIFICALLY
ASK IN THE GROUPS, WELL, WHAT IS THE EFFECT OF
CULTURE?
AND INSTEAD WE WAITED TO SEE LIKE WE DID WITH
SEXUALITY IN THE OTHER TOPICS WHAT WOULD
EMERGE AND AS MICHELLE WILL SHARE, CERTAINLY
AND PARTICULARLY AMONG OUR AFRICAN AMERICAN
PARTICIPANTS AND TO SOME EXTENT OUR NATIVE
AMERICAN PARTICIPANTS, THERE WERE SOME THEMES
THAT SEEMED TO BE MORE DOMINANT AND SHE'LL
TELL YOU ABOUT THAT NEXT.

>> RACHEL:  I'M GOING TO LET YOU GUYS GO AHEAD.
I THINK THE REST OF THE QUESTIONS ARE GOING TO
RELATE TO THE NEXT PART OF YOUR PRESENTATION.

>> MICHELLE:  OKAY, THANKS.
WHAT I'M GOING TO DO NOW IS TALK ABOUT OUR
RESULTS AND WHAT I'M GOING TO DO IS KIND OF GIVE
YOU AN OVERVIEW AND THEN GIVE YOU SOME
SPECIFIC QUOTES AND I'M GOING TO TRY TO SLOW
DOWN SO YOU CAN GET THEM IN THE CAPTIONING.

BUT I HAVE A LOT, SO IF YOU CAN BE PATIENT, I'M
GOING TO WORK THROUGH WHAT I HAVE AND THEN AT
THE END IF I'VE MISSED SOMETHING OR YOU HAVE ANY
PARTICULAR QUESTIONS ABOUT A PARTICULAR TOPIC
THAT WAS MENTIONED, PLEASE GO AHEAD AND ASK
BECAUSE I DON'T HAVE TIME TO COVER EVERYTHING
THAT WE HEARD.
SO I'M REALLY HITTING SOME MAIN THEMES, BUT
CERTAINLY WE HAVE A LOT OF DIVERSITY IN OUR
COMMENTS.
SO WE MAY HAVE HEARD SOMETHING AND WE MAY BE
ABLE TO TELL YOU WHAT HAPPENED THAT I'M NOT
GOING TO PRESENT RIGHT NOW.

SO LET ME JUST DIVE IN AND SAY THAT YOU CAN
REALLY DIVIDE UP THE COMMENTS THAT WE HEARD
INTO TWO MAIN CATEGORIES, ONE WE ASKED THE
QUESTIONS ABOUT DEFINITIONS OF HEALTHS AND
WELLNESS, AND TWO, WE ASKED FOR INFORMATION
ON FACILITATORS, BARRIERS, STRATEGIES TO HEALTH
AND WELLNESS.
SO I'M GOING TO START WITH THE FIRST PART WHICH IS
DEFINITIONS OF HEALTH AND WELLNESS.
AND AFTER LISTENING TO OUR PARTICIPANTS TELL US
WHAT THEY BELIEVE THE DEFINITIONS OF HEALTH AND
WELLNESS ARE FOR THEM, WE PICKED OUT FOUR MAIN
THEMES, FOUR OR FIVE MAIN THEMES THAT SURFACED
THE MOST IN THE COMMENTS THAT WE HEARD.

ONE THEME WAS BEING ABLE TO FUNCTION AND DO
WHAT YOU WANT TO DO.
AND AN EXAMPLE STATEMENT OF THIS THAT A
PARTICIPANT SAID IS, QUOELT, AT THE END OF THE
DAY, IF I FEEL LIKE I'VE ACCOMPLISHED SOMETHING,
THINGS I FELT WERE IMPORTANT TO ACCOMPLISH,
THEN I FEEL LIKE I HAD A WELL DAY, END OF QUOTE.

ANOTHER THEME WAS BEING INDEPENDENT OR
SELF-DETERMINING, HAVING SOME SORT OF CONTROL
OVER WHAT YOU DO, HOW, WHEN AND WHERE YOU DO
IT AND WITH WHO.
EXAMPLES OF THIS ARE TWO STATEMENTS.
ONE, QUOTE, EVEN THOUGH I AM IN A WHEELCHAIR
AND CAN'T WALK, HEALTH AND WELLNESS MEANS TO
ME TO DO AS MUCH AS YOU CAN FOR YOURSELF.
THE SECOND QUOTE IS, I THINK HEALTHY HAS TO DO
WITH IF YOU ARE GOING TOWARDS A GOAL THAT YOU
WANT TO ACHIEVE IN LIFE OR IF YOU'RE JUST SETTLING
FOR THIS IS IT.
IF YOU'RE DOING WHAT YOU WANT TO DO AND GOING
IN THE DIRECTION YOU WANT TO GO, YOU'RE PRETTY
MUCH HEALTHY.

ANOTHER THEME WE HEARD WAS BEING ABLE TO
WORK OR MAKE A CONTRIBUTION, AND ONE EXAMPLE
OF THIS IS ONE MAN SAID, "HEALTH MEANS TO ME
THAT IN THE 19 YEARS I'VE LIVED HERE, I HAD TO
MAKE A LIVING LIKE EVERYONE ELSE."  AND WE HAD
ONE QUOTA ROUND SEXUALITY ADDRESSING THAT
QUESTION IN THIS AREA, AND THAT QUOTE WAS MADE
BY TWO MALE PARTICIPANTS.
THE EXPRESSION WAS GIVEN BY TWO MALE
PARTICIPANTS.
ONE QUOTE WAS MAN'S EVALUATION OF HIMSELF IS
BASICALLY IN TWO AREAS, HIS EMPLOYMENT AND HIS
PENIS.
THESE TWO THINGS ARE SO IMPORTANT AND
ABSOLUTELY DOWN TO THE BASE OF WHAT EVERY
MAN I KNOW FEELS." 
MOVING ON, A THIRD DEFINITIONAL THEME HAD TO DO
WITH CONSIDERING HEALTH AND WELLNESS TO BE
BOTH A PHYSICAL AND EMOTIONAL STATE OF
WELL-BEING.
AN EXAMPLE QUOTE OF THIS IS ONE PARTICIPANT SAID,
"WELL, FOR ME, HEALTH AND WELLNESS
ENCOMPASSES SEVERAL THINGS, PHYSICAL HEALTH,
EMOTIONAL HEALTH, SPIRITUAL HEALTH.
I LOOK AT THOSE THREE AND TRY TO LOOK AT
NURTURING MYSELF IN ALL THREE AREAS, AND WHEN I
FEEL THAT I HAVE A GOOD BALANCE IN THESE THREE
AREAS, I FEEL THAT I HAVE ACHIEVED A GOOD LEVEL
OF HEALTHS AND WELLNESS." 
AND THE FINAL THEME THAT WE HEARD IN
DEFINITIONS OF HEALTH AND WELLNESS WAS THE
ABSENCE OF PAIN.
AN EXAMPLE QUOTE OF THIS IS, A PARTICIPANT SAID,
"MY IDEA OF HEALTH IS SEVERITY OF PAIN.
IF IT'S HIGH, VERY HIGH, I'M NOT FEELING WELL.
IF IT'S REAL LOW, THEN I'M IN A GOOD POSITION." 

AND WE FOLLOWED UP THIS QUESTION OF WHAT IS
YOUR DEFINITION OF HEALTH AND WELLNESS BY
ASKING HOW HEALTH AND WELLNESS IS DIFFERENT
FOR PEOPLE LIVING WITH DISABILITY IN COMPARISON
TO THEIR NO*P DISABLED PEERS.
AND PARTICIPANTS IN GENERAL TALKED ABOUT
RESILL YEN IS I AND THE ADDED IMPORTANCE OF
HEALTH AND WELLNESS IN THEIR LIVES.
SO EXAMPLES OF WHAT WE HEARD IN THE DIFFERENCE
OF HEALTH AND WELLNESS IS -- ONE QUOTE IS, "IT'S A
RESILIENCE.
IT'S NOT SOMETHING THAT CAN BE DEFINED BY ANY
SET OF SYMPTOMS OR LACK OF SYMPTOMS.
IT'S BOUNCING BACK BECAUSE AS HUMAN BEINGS
WE'RE GOING TO RUN INTO BARRIERS OF VARIOUS
KINDS AND IT'S OUR ABILITY TOLL REACT FAVORABLY
FROM OUR BASELINE, WHATEVER THAT IS." 
A SECOND QUOTE IS HEALTH AND WELLNESS WAS SO
LITTLE A PART OF LIFE BECAUSE YOU HAD IT AND NOW
THAT YOU DON'T HAVE IT IT'S A LOT BIGGER PART.
AND MOST OF THE THINGS YOU DO NOW ARE GEARED
TOWARDS HEALTH AND WELLNESS AND BEFORE IT
WAS JUST SOMETHING EXPECTED.


I'M GOING TO MOVE ON TO THE SECOND SET OF
COMMENTS WE HEARD WHICH WERE MORE
SPECIFICALLY ABOUT FACILITATORS AND BARRIERS TO
HEALTH AND WELLNESS, AND IN THE DISCUSSIONS WE
HAD ABOUT THAT, SOMETIMES PARTICIPANTS WOULD
OFFER STRATEGIES THAT THEY USED TO OVERCOME
SOME OF THESE BARRIERS AND SO I'VE INCLUDED
SOME OF THOSE HERE.

THE COMMENTS -- WE GOT A LOT OF DATA FROM
TALKING TO THIS NUMBER OF PEOPLE, 99 PEOPLE.
SO WHAT WE DID AFTER WE WENT THROUGH AND
CODED THEM, WE REALLY DIVIDED THEM INTO THREE
MAIN CATEGORIES.
WE HAVE STATEMENTS RELATED TO THE INDIVIDUAL
OR THE PERSON.
WE HAVE STATEMENTS RELATED TO THE COMMUNITY.
AND WE DEFINED COMMUNITY AS BROADLY
INCLUDING FRIENDS, FAMILY, DOCTORS AND OTHER
INDIVIDUALS.
AND WE HAVE STATEMENTS RELATED TO SYSTEMS,
WHAT WE'VE IDENTIFIED AS SYSTEMS.
AND THOSE INCLUDE COMMENTS THAT MENTION
SOMETHING ABOUT THE PHYSICAL ENVIRONMENTS,
ABOUT INSURANCE REGULATIONS, ABOUT FINANCIAL
ISSUES, ANYTHING THAT REALLY OCCURS AT AN
INSTITUTIONAL OR REGULATORY LEVEL AND IT'S NOT
DIRECTLY ABOUT PEOPLE PER SE BUT IT'S ABOUT
SYSTEMS AND STRUCTURES.


>> RACHEL:  I'M SORRY TO INTERRUPT YOU, THE
CAPTIONER WANTS TO KNOW IF YOU CAN SLOW DOWN
JUST A LITTLE BIT MORE.

>> MICHELLE:  I CAN DEFINITELY TRY.

>> RACHEL:  SORRY.
YOU HAD SLOWED DOWN, BUT I KNOW IT'S
INTERESTING AND THE MORE YOU TALK, THE FASTER
IT GETS AND MARIE IS DYING OVER THERE.
THANKS.

>> MICHELLE:  NO PROBLEM.
I'M GOING TO GIVE YOU A QUICK OVERVIEW OF WHAT
WE HEARD IN REGARDS TO FACILITATORS AND
BARRIERS AT THE LEVEL OF THE PERSON.
AND THESE INCLUDE -- WE GOT TWO -- THREE MAJOR
THEMES SURFACED WITHIN THIS CATEGORY.
THE FIRST THEME RELATED TO EMOTIONAL
WELL-BEING, AND WE DEFINED EMOTIONAL
WELL-BEING OR INCLUDED IN THIS CATEGORY I
SHOULD SAY THINGS THAT -- COMMENTS THAT
RELATED TO STRESS, MENTAL HEALTH, DEPRESSION,
THINGS LIKE THAT.
AND THEY INCLUDE BOTH POSITIVE AND NEGATIVE
COMMENTS.

SO AN EXAMPLE OF A POSITIVE EMOTION THAT WE
HEARD AT THIS PERSONAL LEVEL IS THIS QUOTE,
AGAIN, REMEMBER THIS IS TALKING ABOUT
FACILITATORS AND BARRIERS TO HEALTH AND
WELLNESS.
THE QUOTE IS, I WAKE UP EVERY MORNING WITH A
SENSE OF WELL-BEING AND IT DOESN'T MATTER IF I'M
IN THE HOSPITAL WITH A BROKEN HIP, IF I'M NOT
WALKING FOR A MONTH, IT'S JUST SOMETHING THAT
HAS ALWAYS BEEN THERE AND IT JUST DOESN'T EVER
GO AWAY.

A SECOND QUOTE IS MORE IN THE NEGATIVE
DIRECTION REGARDING EMOTIONS, AND THE QUOTE IS,
THERE IS A WAR WH YOUR IN ME, BUT THAT WAR YOUR
YOUR GETS TIRED AND THE FRUSTRATION OF HAVING
EVERY PART OF YOUR LIFE AFFECTED AGAIN AND
AGAIN BY THOUGHTLESS PEOPLE, BY CROOKED
BUREAU CATS, BY OH, IT'S CONSTANT.
ABLE BODED PEOPLE DO NOT HAVE TO DEAL WITH
SUCH FROM YOUS TASTING AND IT TAKES SO MUCH
OUT OF YOU.

WE HEARD A STRATEGY IN THIS CATEGORY AS WELL.
ONE INDIVIDUAL SAID, MENTAL HEALTH IS REAL
IMPORTANT, AND FOR ME, SEEING A COUNSELOR IS
HELPING IN TRYING TO LEARN DIFFERENT COPING
STRATEGIES OF LEARNING HOW TO ADJUST WHEN
BECOMING MORE PHYSICALLY CHALLENGED.
IT'S LIKE A WHOLE NEW LIFESTYLE FOR ME.
AND I'M KIND OF FIGURING OUT HOW TO GO ABOUT IT
AND TO DO THE THINGS THAT I STILL WANT TO BE
ABLE TO DO.

THE SECOND THEME THAT WE HEARD WITHIN THIS
EMOTIONAL CATEGORY RELATED TO PERSONAL
ATTITUDE.
AND WE TRIED TO SEPARATE EMOTIONAL WELL-BEING
AND PERSONAL ATTITUDE.
WE REALLY THOUGHT THEY WERE DIFFERENT
CONCEPTS, AND EXAMPLES OF WHAT WE CLASSIFIED
AS PERSONAL ATTITUDE HAS TO DEAL WITH
SOMEONE'S FRAME OF MIND OR THEIR PERSONAL
BELIEFS, IF THEY SPOKE SPECIFICALLY ABOUT USING
THE WORDS ATTITUDES OR BELIEF, IT WENT INTO THIS
CATEGORY.

ONE OF THE QUOTES WE HEARD FROM A PARTICIPANT
WAS, THERE IS NOTHING I CAN DO ABOUT HAVING MS,
BUT THERE IS SOMETHING I CAN DO ABOUT MY
ATTITUDE.
SO WHY WOULD I SIT THERE AND GO, OH, ME, OH MY, I
DON'T WANT TO GO ANYMORE.
I SAY, I GOT MS, BUT THAT DOESN'T HAVE TO AFFECT
MY ATTITUDE.

THERE WAS A LOT OF DISCUSSION ABOUT RELIGION IN
OUR FOCUS GROUPS, AND WE FOUND THAT IT WAS
OFTEN THOUGHT OF AS A STRATEGY OR A
FACILITATOR TO HEALTH AND WELLNESS.
WE PUT KNIT THIS CATEGORY OF PERSONAL BELIEFS
AND ATTITUDE AND HERE IS AN EXAMPLE.
THE QUOTE IS, I'M AFFIRM BELIEVER THAT GOD WORKS
IN MYSTERIOUS WAYS.
SO IF SOMEBODY DOES SOMETHING NEGATIVE TO ME, I
TRY TO THINK OF IT IN A WAY OF MAYBE I'M SUPPOSED
TO LEARN FROM THIS.
AND I THINK I JUST GIVE IT TO A HIGHER POWER.

ONE OF THE OTHER THEMES OR KIND OF SUB
CATEGORIES WE HEARD WAS ABOUT CONTRIBUTION.
THIS ALSO WE FELT CAME UNDER PERSONAL BELIEFS
AND PERSONAL ATTITUDE.
AND A QUOTE FROM A PARTICIPANT TALKING ABOUT
CONTRIBUTIONS IS THIS, I WENT TO WORK FOR TEXAS
POLIO SURVIVOR'S ASSOCIATION, AND THAT HAS BEEN
A WONDERFUL GOD-SEND TO ME.
IT HAS BEEN SO WONDERFUL WORKING WITH ALL THE
PEOPLE AND FEELING LIKE I'M CONTRIBUTING
SOMETHING THAT DIDN'T HAVE TO DO WITH THE
DOLLAR SIGN.
CONTRIBUTING SOMETHING OF MYSELF, COMPASSION,
SYMPATHY, JUST LISTENING IF THEY WANTED TO TALK
OR SOCIALIZE WITH THEM, THAT'S WHAT IT TAKES.

THE LAST THEME WE HAD IN THIS LEVEL OF THE
PERSON WAS HEALTH BEHAVIORS.
WE HEARD A LOT ABOUT WHAT ACTIVITIES PEOPLE
ENGAGE IN.
WE HEARD A LOT ABOUT DIET AND EXERCISE.
WE HEARD A LOT ABOUT ALTERNATIVE MEDICINE.
ONE OF THE FOCUSES OF OUR CENTER ON HEALTH AND
WELLNESS IS TO LOOK AT COMPLIMENTARY AND
ALTERNATIVE MEDICINE AND WE HEARD A LOT ABOUT
THAT IN HERE.
SO I'M GOING TO TALK ABOUT -- I'M GOING TO GIVE
YOU QUOTES FROM TWO HEALTH BEHAVIORS.
THE FIRST EXAMPLE IS THE COMPLIMENTARY AND
ALTERNATIVE MEDICINE EXAMPLE AND THIS ALSO MIB
A STRATEGY.
THE QUOTE IS I DON'T THINK I'D BE AS HEALTHY AS I
AM TODAY IF I HADN'T STARTED WORK WITH A NEURO
PATH ABOUT TWO AND A HALF YEARS AGO.
HE USES ACUPUNCTURE.
AN EXAMPLE OF EXERCISE, SOMEONE SPEAKING
ABOUT EXERCISE IS THE BETTER PHYSICAL CONDITION
WE'RE IN, IF THAT MEANS EXERCISE OR SWIMMING OR
WHATEVER IT DOES, THE BETTER PHYSICAL CONDITION
WE CAN BE IN PHYSICALLY, MENTALLY, EVERYTHING
LIKE THAT, THE LESS THE DISEASE MESSES WITH US.

I'M GOING TO MOVE NOW TO TALKING ABOUT
FACILITATORS, BARRIERS AND STRATEGIES WE HEARD
AT THE COMMUNITY LEVEL, WHICH REALLY IS KIND OF
OUR SECOND TIER OF UNDERSTANDING HEALTH AND
WELLNESS EXPERIENCE.
WE HAVE TWO MAIN THEMES, ONE WAS SOCIAL
SUPPORT AND THE SECOND WAS THE SIGNIFICANCE OF
HEALTH CARE PROVIDERS.

I'M GOING TO START WITH SOCIAL SUPPORT.
MOSTLY THIS WAS IDENTIFIED AS A POSITIVE
FACILITATOR TOWARDS HEALTH AND WELLNESS, BUT
WE DID HAVE SOME PEOPLE TALK ABOUT SOCIAL
SUPPORT OR FAMILIES AND FRIENDS ACTING AS
BARRIERS.
SO I'M GOING TO GIVE YOU A COUPLE OF EXAMPLES OF
POSITIVE COMMENTS ABOUT THE IMPORTANCE OF
FAMILY AND FRIENDS.
ONE PARTICIPANT SAID, IF YOU FEEL LIKE SOMEBODY
CARES FOR YOU, I THINK IT GIVES YOU REASON TO
GIVE SOMETHING BACK.
WHEREAS IF YOU DON'T FEEL LIKE SOMEBODY CARES
FOR YOU, THEN I MEAN, IS THERE ANY POINT IN IT?

A SECOND QUOTE WAS, WHEN I'M DEPRESSED, I TEND
TO ISOLATE AND NOT WANT TO TALK ABOUT IT OR
TELL ANYBODY.
AND SO HAVING SOME FRIENDS THAT UNDER STAND
THAT ABOUT ME AND ACCEPT ME AT THOSE LOW
POINTS, YOU KNOW, ARE IMPORTANT.

A FINAL QUOTE FROM AN ATHLETE WE HAD IN OUR
GROUP WAS, WHEELCHAIR SPORTS SERVE SEVERAL
FUNCTIONS, AND THAT HAS ALLOWED ME TO BE
AROUND POO*EFRS WITH SIMILAR PROBLEMS AND
SIMILAR SITUATIONS.
SO IT PROVIDED A SOCIAL NETWORK.
I THINK THAT HELPED MY PSYCHE A LOT.

AND OF COURSE PHYSICALLY IT HELPS LEARNING HOW
TO USE A CHAIR AND DEVELOP STRENGTH.

SOME OF THE NEGATIVE COMMENTS WE HEARD WERE
DIRECTLY ABOUT INSENSITIVITY OF OTHERS.
PEOPLE THEY DIDN'T KNOW, PEOPLE THEY MIGHT HAVE
MET ON THE STREET, RUN INTO IN OTHER KIND OF
PUBLIC AREAS.
AND THE QUOTES WE HAD FROM THESE ARE, ONE OF
THE THINGS UNDER POSITIVE ENERGY AND MOOD
THAT I FOUND FOR MYSELF IS THERE ARE CERTAIN
PEOPLE THAT I LOVE DEARLY, BUT I HAVE TO RESTRICT
ASSOCIATION WITH BECAUSE THEY'RE NOT POSITIVE.
I HAVE ONE DEAR FRIEND, DEAR FRIEND, THAT EVERY
TIME SHE SEES ME, NO MATTER HOW I'M FEELING, SHE'S
ALWAYS SAYING YOU DON'T LOOK LIKE YOU FEEL
WELL.

A SECOND QUOTE IS THE THING THAT REALLY
IRRITATES ME IS WHEN MY WIFE AND I GO SOMEPLACE
AND SHE'S IN A WHEELCHAIR AND THE PEOPLE,
THEY'LL COME UP AND SAY, CAN SHE DO THIS?
AND I SAY, ALL I SAY IS WHY DON'T YOU ASK HER?

THE SECOND THEME WE HAD IN THE COMMUNITY
AREA WAS REALLY ABOUT HEALTH CARE PROVIDERS,
AND A LOT OF THE COMMENTS WE HEARD WERE
NEGATIVE TOWARDS HEALTH CARE PROVIDERS AND
THE SERVICES THAT PEOPLE RECEIVED IN HEALTH
CARE SETTINGS.

I'M GOING TO PROCESS THIS BY SAYING WE DID HEAR
SOME POSITIVE THINGS AND I WANT TO GIVE THOSE TO
YOU FIRST BEFORE WE HEAR SOME NEGATIVE THINGS.
I'M NOT GOING TO GIVE YOU QUOTES, BUT JUST
GENERALLY TELL YOU WHAT WE HEARD FROM
PARTICIPANTS WHO SAID THEY HAD A DOCTOR THAT
THEY LIKED AND TRUSTED, THEY COMMENTED ON THE
CONCERN AND CARE THAT A PHYSICIAN SHOWED
TOWARDS THEM.
THEY TALKED ABOUT THE PHYSICIAN'S WILLINGNESS
TO GET INVOLVED IN INSURANCE DISPUTES OR WRITE
LETTERS ON THEIR BEHALF.
OR JUST THEIR WILLINGNESS TO LISTEN TO THE
PARTICIPANT OR THE INDIVIDUAL AND UNDERSTAND
THAT PERSON, UNDERSTAND THE SITUATION, AND
HAVE KNOWLEDGE ABOUT THEIR CONDITION.

SOME OF THE DIFFICULTIES WE HAD -- OR HEARD
ABOUT MEDICAL PROVIDERS REALLY RELATED TO
THEIR ATTITUDES AND THEIR KNOWLEDGE BASE.
SOME OF THE QUOTES WE HAVE FROM PEOPLE IN OUR
STUDY ARE, RIGHT NOW I HAVE A VERY NICE DOCTOR
WHO IS LIKE REALLY GOOD IN TERMS OF TRYING TO
WORK WITH ME, BUT SHE'S NOT AS COMPETENT AS I
WOULD LIKE.
THERE ARE SOME DOCTORS WHO MIGHT BE BETTER,
BUT WHAT THEY DO TO ME EMOTIONALLY, IT'S NOT
WORTH IT.
YOU KNOW, IT'S ALWAYS -- IT FEELS LIKE I'M WALKING
A TIGHT ROPE.
I'D LOVE TO FIND SOMEBODY THAT'S BOTH A REALLY
GOOD DOCTOR AND WHO IS NOT PREJUDICED AGAINST
ME, YOU KNOW.
WHO CAN REALLY SEE ME FOR ME.

A SECOND COMMENT IS, NO MATTER WHAT I GO IN FOR,
THEY LOOK AT THE DISABILITY FIRST AND FORGET
ABOUT WHATEVER I'M TALKING ABOUT, WHETHER IT
HAS TO DO WITH THE DISABILITY OR NOT.
EVERYBODY JUST STOPS AND SAYS I HAVE TO GO TO A
SPECIALIST FOR THIS OR THAT.

AND A FINAL COMMENT IN THIS CATEGORY IS TALKING
ABOUT LACK OF KNOWLEDGE.
ONE PARTICIPANT SAID, WE HAVE DOCTORS NOW THAT
ARE SO YOUNG, THEY'VE NEVER EVEN SEEN A CASE OF
POLIO, AND SEVERAL OF MY DOCTORS, I'VE HAD TO
EDUCATE THEM AND SEND THEM MATERIALS AND
TALK TO THEM ABOUT IT BECAUSE THEY DON'T HAVE
ANY EXPERIENCE.

FINALLY, I'M GOING TO MOVE TO OUR THIRD
CATEGORY WHICH IS COMMENTS WE HEARD ABOUT
THE SYSTEMS LEVELS THAT REALLY FELL INTO TWO
MAIN CATEGORIES.
THE FIRST CATEGORY, PEOPLE TALKED A LOT ABOUT
ACCESS AND ACCOMMODATION.
THE SECOND CATEGORY IS PEOPLE TALKING ABOUT
KIND OF INSTITUTIONAL BARRIERS, ABOUT
REGULATIONS AND FINANCING MECHANISMS THAT
THEY FELT GOT IN THEIR WAY.

FIRST LET ME START WITH THE ACCESS
ACCOMMODATION PART.
LET ME SAY THAT A LOT OF PARTICIPANTS FELT THAT
BEING ABLE TO GET OUT OF THEIR HOMES, GET TO
DIFFERENT ACTIVITIES AND PARTICIPATE IN ACTIVITIES
ONCE THEY ARRIVED AT THOSE FACILITIES WERE
ESSENTIAL TO MAINTAINING A HEALTHY LIFESTYLE.

AND SOME OF THE COMMENT WE HEARD AROUND THIS
ARE AS FOLLOWS:  ONE PARTICIPANT SAID, HEALTH
AND WELLNESS IS A TOTAL PACKAGE OF FEELING
POSITIVE ABOUT OURSELF, HAVING ACCESSIBILITY TO
BE ABLE TO GO OUT AND DO THINGS.
ANOTHER SAID, TO ME, THE ACCESSIBLE
ENVIRONMENT IS MORE OF A MENTAL.
IT WORKS MORE TOWARD THE MENTAL HEALTH
BECAUSE I KNOW I GET REALLY FRUSTRATED WHEN I
GO OUT AND PLACES AREN'T ACCESSIBLE.

WE ACTUALLY HAVE SOME COMMENTS ABOUT PEOPLE
NOT BEING ABLE TO GET SERVICES THEY NEEDED
BECAUSE OF ACCESSIBILITY PROBLEMS.
TWO OF THOSE WE HEARD WERE BY ONE WOMAN WHO
SAID, I HAVEN'T BEEN ABLE TO HAVE A PAP SMEAR
TEST IN FOUR OR FIVE YEARS BECAUSE THE TABLES
AREN'T RIGHT FOR ME.
I MENTIONED IT TO THE DOCTOR ONE TIME.
HE SAID, THEY HAVE AN EXPENSIVE TABLE THEY CAN
GET, BUT HE SAID, MAYBE YOU OUGHT TO GO TO
ANOTHER DOCTOR.
SO I HAVEN'T BEEN BACK.

ANOTHER COMMENT WAS I'D LOVE TO BE ABLE TO GET
INTO THE SPA, AND THEY HAVE A WONDERFUL SPA
WHERE I SWIM, BUT THERE IS NOT A DESCENT LIFT TO
GET INTO IT.
THEY HAVE A SLING TYPE WHICH DOESN'T WORK FOR
US ANYMORE.
IT'S SO FATIGUING TO USE, SO DEHUMANIZEING THAT
IT'S JUST NOT WORTH IT.
AND ONE COMMENT THAT RELATED TO ACCESSIBILITY
TO FINANCING IS BY A MAN WHO SAID, ONCE MY
SCOOTER GIVES OUT, WHAT AM I GOING TO DO?
ONCE MY VAN GOES OUT, WHAT AM I GOING TO DO?
SO IT'S NOT SO MUCH, YOU KNOW, OBTAINING THE
ASSISTIVE DEVICES THE FIRST TIME, BUT REPLACING
THEM.
BECAUSE ONCE MY SCOOTER GIVES OUT, HOW DO I
WALK?
I MEAN, HOW DO I GET AROUND?
HOW DO I GO SHOPPING AND ALL THAT, YOU KNOW?
THAT PLAYS INTO WHAT IS A GOOD DAY.

AND OUR FINAL SET OF COMMENTS ARE REALLY
ABOUT THE REGULATIONS AND FINANCING AND THE
COST OF LIVING WITH DISABILITY.
SOME OF THE COMMENTS WE HEARD ABOUT COSTS
ARE, ONE MAN SAID, IT'S INCREDIBLY MORE EXPENSIVE
TO LIVE WITH A DISABILITY.
THERE ARE A NUMBER OF THINGS LIKE THAT YOU
HAVE TO DO, THINGS IN YOUR HOME THAT YOU HAVE
TO DO.
THERE IS ABSOLUTELY NO COVERAGE, NO
CONSIDERATION FROM ANY ANGLE THAT IT COSTS
YOU THAT MUCH MORE TO LIVE WHICH TAKES AWAY
FROM OTHER THINGS.

ANOTHER PERSON SAID, I THINK PROBABLY THE THING
THAT I HAVE ALWAYS BEEN -- HAD TO FACE AND WILL
CONTINUE TO FOR THE REST OF MY LIFE, I HAVE TO
FACE THE FINANCIAL ASPECT OF HOW TO CONTINUE TO
CARRY ON WITH LIMITED, VERY LIMITED FINANCIAL
RESOURCES AND THAT'S THE ONE THAT SCARES ME.

REGARDING INSURANCE, WE HAD A LOT OF COMMENTS
ABOUT HMO'S AND FINANCING.
ONE MAN SAID, HMO'S ARE JUST THE BAIN OF PEOPLE
WITH CHRONIC DISABILITIES BECAUSE WE DON'T FIT
INTO THEIR TIGHT LITTLE MODEL OF MAKING MONEY
OFF OF HEALTH CARE.
WE'RE TOO EXPENSIVE FOR THEM.

ANOTHER PERSON SAID, I WOULD LOVE TO SEE
CHANGES IN TERMS OF COVERAGE OF PHYSICAL
THERAPY, THINGS LIKE BEING ABLE TO USE A WARM
WATER POOL, ACUPUNCTURE, MASSAGE, THERE ARE
SO MANY THINGS THAT WOULD RAISE THE QUALITY OF
OUR LIVE AND IT'S PREVENTATIVE CARE AND IT WILL
SAVE EVERYBODY MONEY IN THE LONG RUN.
BUT MEDICALIFORNIA, WHICH IS IN CALIFORNIA,
DOESN'T COVER ANY OF THAT STUFF AND THOSE KIND
OF SERVICES IS JUST REALLY PART OF WELLNESS.
I THINK NONDISABLED PEOPLE HAVE ACCESS TO THEM
BECAUSE FINANCIALLY THEY CAN AFFORD IT, BUT
PEOPLE WITH DISABILITIES, IT'S OFTEN NOT AN OPTION.

WE DID HEAR A COUPLE OF STRATEGIES ABOUT
FINANCING, ONE PERSON SAID THAT -- THIS IS THEIR
QUOTE, THERE IS SORT OF AN INFORMAL NETWORK OF
PATIENTS WHO WILL SAY MY DOCTOR GAVE THIS TO
ME.
YOU SHOULD SWITCH YOUR DOCTOR TO MY DOCTOR.
I KNOW FOUR OR FIVE GUYS WHO GO TO THE SAME
SPECIALIST FOR SPINAL CORD INJURIES.
HE'S VERY WHEELCHAIR KNOWLEDGEABLE AND VERY
WHEELCHAIR FRIENDLY, AND SHE'S WRITTEN THREE
PRESCRIPTIONS FOR HIGH TECH CHAIRS AND SHE
KNOWS WHAT SHE'S TALKING ABOUT AND GETS
RESULTS.

THE FINAL SET OF COMMENTS REALLY PERTAINS TO
RACIAL AND ETHNICS BARRIERS.
OUR SAMPLE, AS LAURIE POINTED OUT WAS PRETTY
DIVERSE IN ETHNICITY AND CULTURE AND WE CHOSE
TO PUT THESE COMMENTS IN THIS CATEGORY BECAUSE
WE REALLY THINK THEY ARE DIRECTED MORE AT
STRUCTURAL PROBLEMS.
OFTENTIMES IT'S REPRESENTED IN THE DAY TO DAY
INTERACTIONS THAT PEOPLE HAVE WITH OTHER
INDIVIDUALS.

TO GIVE YOU TWO COMMENTS THAT WE HEARD ABOUT
RACE AND DIVERSITY THAT ADDED AN EXTRA LAYER
OR DIMENSION TO THE EXPERIENCE OF LIVING WITH
DISABILITY AND THE DIFFICULTY OF BEING HEALTHY
AND WELL, HERE IS TWO COMMENTS FROM PEOPLE IN
OUR STUDY.
THE FIRST IS, IF YOU'RE AFRICAN AMERICAN IN THIS
SOCIETY, NOW YOU'RE WORKING AGAINST A COUPLE
OF OTHER ISSUES BECAUSE NOW THEY WANT TO LOOK
AT YOU, AND YOU'RE TALKING ABOUT BEING ON THE
JOB AND BEING DISABLED.
THEY'RE ALSO GOING TO BE JUDGING YOU ABOUT
YOUR COLOR AS WELL.

AND A SECOND COMMENT WE HEARD, I'VE GOTTEN
USED TO THE STAIRS, IT'S LIKE -- ESPECIALLY IF YOU'RE
AN AFRICAN AMERICAN MALE IN A WHEELCHAIR, I CAN
ALMOST READ THEIR MINDS.
GANG MEMBER, DRUG DEALER.
IT'S ALL NEGATIVE.
ALWAYS NEGATIVE.

I'M GOING TO STOP THERE AND SAY ONCE AGAIN WE
DID HEAR OTHER COMMENTS PEOPLE MADE OTHER
STATEMENTS, AND WE HAVE SOME OTHER
CATEGORIES OF STATEMENTS THAT WE HAVEN'T
INCLUDED IN HERE TODAY.
BUT IF YOU'RE WONDERING, THIS HAS JUST BEEN A
QUICK OVERVIEW AND IF YOU'RE WONDERING IF WE'VE
HEARD ABOUT ANY OTHER TOPICS OR THEMES, PLEASE
GO AHEAD AND ASK US.
SO I'M GOING TO STOP HERE AND KIND OF HAND IT
BACK TO LAURIE.


>> RACHEL:  WOULD YOU LIKE TO HEAR QUESTIONS OR
LAURIE, DID YOU WANT TO TALK A LITTLE BIT MORE?

>> LAURIE:  YOU KNOW, I THINK ACTUALLY MAYBE IT
WOULD BE A GOOD IDEA TO TAKE A FEW QUESTIONS.
I'M GOING TO TALK -- JUST FINISH UP WITH TALKING
ABOUT SOME IMPLICATIONS, BUT I'M THINKING THAT
THERE ARE PROBABLY SOME SPECIFIC QUESTIONS
AROUND RESULTS.


>> RACHEL:  THERE ARE.
WE DO HAVE A LOT OF QUESTIONS ABOUT
IMPLICATIONS SPECIFICALLY THOUGH.

>> LAURIE:  OKAY.

>> RACHEL:  LET ME HOLD OFF ON THOSE AND SEE IF A
COUPLE OF THESE RELATE TO WHAT MICHELLE
COVERED.
ONE IS WERE THERE DIFFERENCES BETWEEN WHAT
THE MEN WERE SAYING AND WHAT THE WOMEN WERE
SAYING?

>> MICHELLE:  I'LL GO AHEAD AND TAKE THAT.
I THINK, YOU KNOW, IN THIS STUDY WE REALLY DIDN'T
CODE FOR GENDER IN PARTICULAR.
WE DID HAVE A GOOD REPRESENTATION OF MEN AND
WOMEN, BUT IN OUR RESULTS WE WEREN'T
PARTICULARLY PAYING ATTENTION TO WHETHER
WOMEN SAID SOMETHING OR WHETHER MEN SAID
SOMETHING.
WE WERE LOOKING TOGETHER AT THE BREATH AND
DEPTH OF COMMENTS.
LAURIE, DO YOU REMEMBER ANY DIFFERENCES BY
GENDER?

>> LAURIE:  WELL, I WOULD JUST CHIME IN TO AGREE
WITH YOU, MICHELLE, THAT IN THIS KIND OF
RESEARCH ONE OF THE THINGS YOU WANT TO BE
CAREFUL TO DO IS TO BE CLEAR THAT THESE WERE 99
FOLKS.
ALTHOUGH WE DID HAVE A PRETTY DIVERSE GROUP OF
FOLKS, WE ALWAYS WANT TO BE CAREFUL NOT TO
TAKE SOME CHARACTERISTIC OF A PERSON AND TO
NECESSARILY SAY THAT, WELL, THEY GAVE THAT
RESPONSE BECAUSE THEY HAD THAT CHARACTERISTIC
BECAUSE THEY WERE A MALE OR FEMALE OR OLDER
OR YOUNGER OR THOSE KINDS OF THINGS.
AND INSTEAD WHAT WE WERE TRYING TO DO IS
REALLY UNDERSTAND AS DEEPLY AS WE COULD WITH
THOSE 99 FOLKS WHAT THEIR EXPERIENCES WERE
THINKING THAT OVER ALL WITH THEM WE COULD GET
A SEPTSDS OF WHAT THE BREDTH OF EXPERIENCES
ARE THAT FOLKS HAD.
NOW, GIVEN THAT, I THINK THAT MY IMPRESSION IS
THAT -- YOU KNOW, WE HEARD CERTAINLY I THINK
MORE ABOUT SEXUALITY FROM SOME OF THE MALE
PARTICIPANTS THAN WE DID FROM THE FEMALE
PARTICIPANTS.
ALTHOUGH, YOU KNOW, SOMETIMES THE MALE
PARTICIPANTS WOULD BRING IT UP AND THEN THE
FEMALE PARTICIPANTS WOULD TAKE IT FROM THERE.
SO, YOU KNOW, -- SO IT'S ALWAYS HARD.
YOU HAVE TO BE CAREFUL ABOUT INTERPRETING
THAT.
I THINK LIKEWISE WE PROBABLY HEARD MORE FROM
THE FEMALE PARTICIPANTS AROUND THE IMPORTANCE
OF RELATIONSHIPS AND SOCIAL SUPPORT, ALTHOUGH
A GOOD NUMBER OF OUR MALE PARTICIPANTS ALSO
TALKED ABOUT HOW MUCH THEY VALUED THE
SUPPORT GROUPS THEY WERE IN OR THEIR CONTACTS
WITH OTHER FOLKS IN OTHER CONTACTS.
SO, YOU KNOW, I THINK THAT WE HAD SOME IDEAS OF
SOME THEMES THAT CAME UP, BUT WE ALWAYS WANT
TO BE CAREFUL ABOUT NOT OVERGENERALIZEING ON
THAT.


>> RACHEL:  I HAVE ANOTHER QUESTION WHICH IS
VERY SPECIFIC AND IT MIGHT BE A LITTLE OUTSIDE
THE SCOPE, BUT I'LL GO AHEAD AND PUT IT OUT THERE
AND WE ALSO CAN FOLLOW UP WITH THIS INDIVIDUAL
LATER IF WE CAN DEVELOP SOME MORE RESOURCES
FOR HER.
BUT SHE WANTS TO KNOW, DO YOU KNOW IF ANYBODY
HAS DEVELOPED ANY MATERIALS ABOUT BREAST
EXAMS FOR WOMEN WITH DISABILITIES?

AND IT SOUNDS LIKE MAYBE SHE'S ALSO INTERESTED
IF THERE ARE ANY MAMMOGRAPHY MACHINES THAT
ARE SPECIFICALLY FOR WOMEN WHO USE
WHEELCHAIRS.


>> LAURIE:  I DON'T.
HOWEVER -- THIS IS LAURIE.
HOWEVER, I DO THINK THAT THE CENTER ON
RESEARCH FOR WOMEN WITH DISABILITIES GROUP
WOULD, AND MY SUGGESTION WOULD BE THAT THEY
WOULD BE A REALLY GOOD SOURCE AT BAYLOR TO
CONTACT.

>> RACHEL:  OKAY, I WILL REFER HER THERE.
LET ME THROW OUT ONE OTHER QUESTION AND THEN I
THINK THE REST WILL PROBABLY WAIT.
THIS QUESTION HAS TO DO WITH DEPRESSION AND
THEY'RE INTERESTED TO KNOW IF PEOPLE SPOKE
ABOUT DEPRESSION, PER SE, AND DID PEOPLE IN THESE
GROUPS HAVE SUGGESTIONS ABOUT WHAT TO DO
WHEN THEY FEEL OVERCOME WITH DEPRESSION?


>> MICHELLE:  THIS IS MICHELLE.
WE DID HEAR COMMENTS ABOUT DEPRESSION.
WE ALSO HEARD COMMENTS ABOUT PEOPLE SAYING
THEY WERE FEELING BLUE, THINGS LIKE THAT.
AND WHEN PEOPLE TALKED ABOUT THAT, THEY
USUALLY PRESENTED THAT AS SOMETHING -- AS
SOMEWHAT OF A PERSONAL BARRIER TO HEALTH AND
WELLNESS, IF YOU WILL, BUT SOMETIMES THEY
WOULD PAIR THAT WITH COMMENTS ABOUT WHAT
THEY DID.
AND A LOT OF WHAT THEY DID HAD TO DO WITH BEING
WITH OTHER PEOPLE, GOING TO SUPPORT GROUPS,
GETTING OUT AND VOLUNTEERING, DOING AN
ACTIVITY THAT THEY LIKED TO ENGAGE IN, WHETHER
IT WAS GARDENING OR TAKING A CLASS.
KIND OF THOSE TYPES OF THINGS.
SO IT DID SEEM THAT PEOPLE GENERALLY HAD
ACKNOWLEDGED THAT THAT WAS A CONDITION THAT,
YOU KNOW, A LOT OF PEOPLE RAN ACROSS OR SEEMED
TO BE FREQUENT AND THEY HAD A LOT OF PEOPLE
HAD KIND OF WORKED OUT A WAY TO GET THROUGH
THAT.


>> RACHEL:  OKAY, I KNOW I SAID I WASN'T GOING TO
ASK ANOTHER ONE BUT I'LL SQUEEZE ONE MORE IN
HERE.
THIS PERSON SAYS THEY STRUGGLE WITH THE PROS
AND CONS OF BEING AMONG OTHER PEOPLE WITH
DISABILITIES AND WANTED TO KNOW IF YOU LEARNED
ANYTHING THROUGH THIS RESEARCH PROJECT ABOUT
THE VALUE AND THEN ALSO THE DRAW BACKS OF
WORKING AND SOCIALIZING AND EVEN LIVING AMONG
OTHER PEOPLE WITH DISABILITIES AS OPPOSED TO
DOING ALL THAT WITH PEOPLE WITHOUT DISABILITIES?


>> MICHELLE:  I'LL GO FIRST LAURIE AND THEN IF YOU
WANT TO CHIME IN.
I DON'T RECALL ACTUALLY HEARING PEOPLE OR
READING IN OUR TRANSCRIPTS PEOPLE SPECIFICALLY
ADDRESSING THAT.
I CAN TELL YOU THAT WE DID HEAR A LOT IN THERE
THAT PEOPLE WITH DISABILITIES WHO SEEMED TO BE
INVOLVED IN SUPPORT GROUPS OR OTHER NETWORKS
OF PEOPLE WHO HAD DISABILITIES AS WELL SEEMED
TO REALLY GAIN A LOT OF KNOWLEDGE AND
INFORMATION FROM THE PEOPLE.
ALSO SOME SOCIAL SUPPORT, AND IT SEEMED THAT
WHAT THEY WERE TELLING US AND IN THEIR
COMMENTS WAS THAT OFTEN THEY GOT THINGS FROM
OTHER PEOPLE WITH DISABILITIES THAT THEY
COULDN'T HAVE GOT FROM PEOPLE WITHOUT
DISABILITIES.
I THINK I READ ONE EXAMPLE, WE HAD A BUNCH OF
WHEELCHAIR BASKETBALL PLAYERS IN A GROUP AND
THEY ALSO PLAYED OTHER SPORTS, AND ONE OF THE
THINGS THAT DREW THEM TOGETHER WAS NOT JUST
PLAYING SPORTS, WHICH THEY ALL LIKED, BUT THE
ABILITY TO HANGOUT WITH EACH OTHER AND LEARN
FROM EACH OTHER, TALK ABOUT THEIR PROBLEMS,
UNDERSTAND WHAT OTHER PEOPLE'S EXPERIENCES
HAVE BEEN AND REALLY BENEFIT FROM THAT IN A
WAY THAT THEY COULDN'T HAVE IF THEY HADN'T
BEEN ENGAGING WITH THOSE PEOPLE.
LAURIE, DO YOU HAVE ANYTHING?

>> LAURIE:  NO, I WOULD AGREE WITH YOU.
WHAT WE DID HERE WAS REALLY ABOUT BEING
RESOURCES TO ONE ANOTHER AND THAT'S BECAUSE
IT'S REALLY DIFFICULT TO GET THE INFORMATION
FROM ANYBODY ELSE AND SOMETIMES IT CAN JUST BE
HELPFUL TO GET SOME INFORMATION AND ALSO TO
HAVE SOME VALIDATION THAT WHAT YOU'RE GOING
THROUGH IS -- THAT YOU'RE NOT ALONE.


>> RACHEL:  OKAY, GREAT.
I'M GOING TO HAND IT BACK TO YOU, LAURIE.

>> LAURIE:  OKAY, WELL, I'M JUST GOING TO DO A
QUICK SUMMARY HERE AND TALK ABOUT A FEW
IMPLICATIONS THAT WE DREW FROM THIS AND THEN
INTERESTED IN HEARING WHAT YOU ALL THINK.

I THINK IT'S FAIR TO SAY FROM MICHELLE'S REVIEW OF
THE RESULTS THAT REALLY TO UNDERSTAND HEALTH
AND WELLNESS BASED UPON THE FINDINGS FROM THIS
STUDY, YOU'VE REALLY GOT TO THINK ABOUT IT AT
THE PERSONAL LEVEL, AT THE COMMUNITY OR THE
SOCIAL LEVEL AND AT THE SYSTEMS LEVEL.
YOU REALLY CAN'T UNDERSTAND IT OR SUPPORT
PEOPLE AROUND IT UNLESS -- UNLESS YOU TAKE INTO
ACCOUNT ALL OF THOSE THINGS.
AND AT THE PERSONAL LEVEL, THINGS LIKE COPING
STRATEGIES, SUPPORTS, STAYING ACTIVE, GETTING
EXERCISE, HAVING AN OPPORTUNITY TO CONTRIBUTE
AND BEING ABLE TO WORK TOWARDS GOALS AND SET
GOALS.

AT THE COMMUNITY LEVEL, THINGS LIKE HAVING
POSITIVE SOCIAL INTERACTIONS WITH OTHER PEOPLE
AND HAVING RESPECTFUL AND KNOWLEDGEABLE
HEALTH PROVIDERS.

AND THEN AT THE SYSTEMS LEVEL, BEING ABLE TO
ACCESS WHAT YOU WANT TO GET TO, BEING ABLE TO
HAVE ACCOMMODATIONS, GET SOME FINANCIAL
RELIEF FROM SOME OF THE ADDITIONAL DEMANDS
ASSOCIATED WITH DISABILITY, AND ALONG WITH
THAT, IMPROVED INSURANCE COVERAGE.

NOW, ALL OF THESE THINGS ARE LINKED AND THERE IS
REALLY GOT TO BE OPPORTUNITY TO EXPERIENCE
THESE THINGS AND HAVE ACCESSIBILITY AND THERE IS
OBVIOUSLY ACCOUNTABILITY BY BOTH INDIVIDUALS
WITH DISABILITIES, HEALTH PROVIDERS, PEOPLE WHO
PUT TOGETHER AND MANAGE SYSTEMS, EVERYBODY IS
GOING TO HAVE TO WORK TOGETHER IN ORDER TO
ADDRESS THESE ISSUES.

WE WERE REALLY QUITE IMPRESSED AT THE LEVEL OF
COLLARITY OF THE PARTICIPANTS, OF BEING ABLE TO
RELATE WHAT THEIR EXPERIENCES WERE, WHAT WAS
WORKING AND WHAT WASN'T AND ONE OF THE
CONCLUSIONS WE DREW FROM THE STUDY IS THAT
PEOPLE WITH DISABILITIES REALLY IN MANY CASES
HAVE MORE EXPERTISE AROUND THIS ISSUE THAN
ANYBODY ELSE DOES, AND THAT WE NEED TO BE
LOOKING TO PEOPLE WITH DISABILITIES MORE AS
RESOURCES IN THIS AREA TO TRY TO SORT OUT WHAT
NEEDS TO BE DONE.

WITH REGARD TO SPECIFIC RECOMMENDATIONS THAT
WE CAME UP WITH, THERE WERE FOUR.
ONE IS THAT WE THINK IT'S JUST REALLY IMPORTANT
AND SEEMS OBVIOUS GIVEN THESE RESULTS THAT
THERE IS A REAL NEED TO EXPAND HOW WE DEFINE
HEALTH AND WELLNESS TO INCLUDE NOT JUST
GETTING CARE WHEN YOU'RE SICK, BUT MAINTAINING
YOUR HEALTH AND BEING ABLE TO ADDRESS
CONDITIONS THAT MIGHT COME UP THAT MIGHT BE
SECONDARY TO YOUR DISABILITY.
YOU KNOW, IT MIGHT BE PRESSURE SORES OR
CIRCULATION OR A VARIETY OF THINGS, THINGS LIKE
THAT THAT MIGHT COME UP AND HEALTH NEEDS TO BE
DEFINED AND WELLNESS NEEDS TO BE DEFINED MORE
BROADLY TO INCLUDE THOSE THINGS.

THE SECOND RECOMMENDATION WE CAME UP WITH IS
THAT WE THOUGHT THAT CONSUMERS OR PEOPLE
WITH DISABILITIES WHO ARE USING HEALTH AND
WELLNESS SERVICES WERE REALLY INTERESTED IN
HAVING ADDITIONAL INFORMATION ON HEALTH
PROMOTION, AND SO OUR RECOMMENDATION IS THAT
THERE BE MORE MATERIALS AND PRODUCTS THAT ARE
AVAILABLE TO PEOPLE WITH DISABILITIES AROUND
HEALTH PROMOTION AND PREVENTION AND SPECIFIC
STRATEGIES AND RESOURCES THEY CAN USE.

THE THIRD RECOMMENDATION IS THAT WE NEED TO
WORK TO INCREASE THE CAPACITIES OF HEALTH
PROVIDERS.
HEALTH PROVIDERS CLEARLY, ACCORDING TO OUR
PARTICIPANTS, NEED MORE INFORMATION ABOUT
HEALTH AND WELLNESS AND DISABILITY, AND
PROBABLY NEED SOME MORE SUPPORT IN ORDER TO
BE ABLE TO PROVIDE HIGH QUALITY CARE.

AND THEN THE FINAL RECOMMENDATION WE CAME UP
WITH IS THAT THERE ARE A VARIETY OF SYSTEMS
ISSUES AND BARRIERS THAT REALLY PREVENT PEOPLE
FROM BEING ABLE TO USE THE STRATEGIES THAT THEY
KNOW WOULD MAKE -- WOULD LEAD TO THEM BEING
MORE HEALTHY AND WELL.

AND THAT ULTIMATELY, WE'VE GOT TO ADDRESS
THOSE SYSTEMS BARRIERS IF PEOPLE ARE GOING TO BE
ABLE TO REALIZE THE HIGHEST LEVEL OF HEALTH AND
WELLNESS IN THEIR LIVES.


>> RACHEL:  GREAT.
ALL RIGHT, WE HAVE A COUPLE OF QUESTIONS THAT
MIGHT ASK YOU ACTUALLY TO REPEAT SOME OF WHAT
YOU'VE SAID.
BECAUSE PEOPLE ARE INTERESTED IN THE
IMPLICATIONS.

ONE HAS TO DO WITH THE LISTENER -- SOUNDS LIKE
FEELS VERY VALIDATED BY LISTENING TODAY AND
SAYS THIS IS ALL VERY INTERESTING AND AS SOMEONE
WITH A DISABILITY, THESE DEFINITIONS AND THESE
QUOTES REALLY REFLECT WHAT THIS PERSON THINKS
HERSELF AND WANTS TO KNOW HOW SHE CAN USE
THIS INFORMATION TO IMPROVE HER RELATIONSHIP
WITH HER DOCTOR AND HER RELATIONSHIP WITH HER
FAMILY.


>> LAURIE:  BOY.
THAT'S -- NOT KNOWING THE RELATIONSHIP WITH HER
DOCTOR OR FAMILY, THAT'S A LITTLE TOUGH TO
ANSWER.
I'M REALLY PLEASED TO HEAR THAT THIS IS
VALIDATING BECAUSE WE'RE HOPING THAT THAT'S
ONE OF THE WAYS THAT PEOPLE WITH DISABILITIES
CAN USE THE RESULTS FROM THIS STUDY, THAT THEY
CAN PERHAPS SEE THAT THERE ARE OTHER FOLKS
WHO ARE HAVING SOME OF THE SAME EXPERIENCES
AND WOULD HAVE THE SAME RECOMMENDATIONS
AND THAT MIGHT MAKE THEM FEEL A LITTLE BIT MORE
CONFIDENT ABOUT BEING ABLE TO TALK, PERHAPS,
WITH THEIR FAMILIES OR THEIR HEALTH PROVIDERS
AROUND WHAT THEIR EXPERIENCES ARE AND WHAT
THEY REALLY WOULD NEED FROM THEM IN ORDER TO
BE DOING BETTER WITH HEALTH AND WELLNESS.

SO THAT IS CERTAINLY -- YOU KNOW, I THINK THAT
THAT VALIDATION CAN GO A LONG WAY IN TERMS OF
REALLY, BOTH GIVING YOU SOME INFORMATION, AND
HELPING YOU TO BE ABLE TO GO AHEAD AND TAKE
THE SHOT AT COMMUNICATING WITH HEALTH
PROVIDERS AND FAMILY MEMBERS.
MICHELLE, DO YOU HAVE ANYTHING ON THAT?

>> MICHELLE:  THE ONLY THING I CAN SAY IS, YOU
KNOW, POSSIBLY LOOK FOR MORE IN THE FUTURE.
I DON'T KNOW THAT WE CAN REALLY ANSWER THAT
QUESTION DIRECTLY RIGHT NOW.
BUT CERTAINLY THE CENTER ON HEALTH AND
WELLNESS -- THIS IS THE FIRST STUDY THAT'S COME
OUT OF THERE.
IT'S REALLY A FOUNDATION AL PIECE AND FROM THAT
WE'RE -- WE HAVE SOME OTHER STUDIES AND WE HAVE
SOME TRAINING PROJECTS AND WE'RE DEVELOPING
DIFFERENT MATERIALS THAT WE REALLY HOPE WILL
ADDRESS THE SPECIFIC ISSUES THAT WE FOUND IN THIS
PIECE AND WE KNOW THAT THIS DOESN'T ANSWER
EVERYONE'S QUESTIONS ABOUT WHAT DO YOU DO
NOW?
AND THIS IS KIND OF OUR FIRST STEP AND WE WOULD
HOPE THAT PEOPLE WOULD KIND OF TAKE THIS LIKE
LAURIE SAID AND SERVE AS SOME SORT OF
VALIDATION ABOUT WHERE THEY'RE AT AND KNOW
THAT THERE IS A SMALL GROUP OF RESEARCHERS AND
PEOPLE WHO ARE INVOLVED IN THIS FIELD WHO ARE
COMMITTED TO MAKING SOME CHANGES, BUT IT WILL
TAKE A LITTLE BIT OF TIME, BUT THEY SHOULD BE
LOOKING FOR THINGS.
ALSO, I WOULD ADD AS ONE PLACE TO GO FOR MORE
INFORMATION IS THE WEB LINK FOR THE CENTER,
WHICH IS WWW.HEALTHWELLNESS.ORG AND YOU CAN
LOOK FOR CONTINUING THINGS THERE COMING OUT OF
THE CENTER.


>> RACHEL:  THERE WAS ANOTHER QUESTION WHICH
MIGHT ASK YOU TO REPEAT -- YOU GUYS ARE
ANTICIPATING THE QUESTIONS HERE.
IT HAS TO DO WITH HOW PEOPLE WITH DISABILITIES
CAN USE THE RESULTS OF THE RESEARCH TO DATE
AND LOOKING AT -- OR ASKING ARE YOU ABLE TO
MAKE SOME GENERALIZATIONS FROM THIS RESEARCH
ABOUT WHAT PEOPLE WITH DISABILITIES CAN DO TO
IMPROVE THEIR HEALTH AND THEIR WELLNESS?


>> LAURIE:  THIS IS LAURIE, AND WE ARE ACTUALLY
FOLLOWING THIS STUDY NOW WITH DOING A SURVEY
IN WHICH WE'RE GOING TO SURVEY ABOUT 300 PEOPLE
WITH DISABILITIES AND WE'RE GOING TO ASK THEM
KIND OF THE EXTENT TO WHICH WE THOUGHT WE
HEARD FROM THESE 99 FOLKS IS SOMETHING THAT
MAKES SENSE TO THEM OR RELATES TO THEIR HEALTH
AND WELLNESS.
SO HOPEFULLY THAT WILL GIVE ADDITIONAL
CREDIBILITY TO WHAT WE LEARN FROM THIS STUDY.
YOU KNOW, I THINK THAT WHENEVER WE HAVE
KNOWLEDGE, YOU KNOW, I THINK THAT EVEN IF IT'S
BEGINNING KNOWLEDGE, IT CAN BE -- IT CAN BE VERY
USEFUL AS A TOOL TO BE ABLE TO COMMUNICATE TO
OTHER PEOPLE, TO BE ABLE TO PERHAPS TALK WITH
HEALTH PROVIDERS AND POLICY MAKERS, AND BEGIN
TO LOOK AT, AS WE SAID BEFORE, THE SYSTEMS ISSUES
AND START TO RAISE SOME OF THE CONCERNS AND
START TO PROPOSE SOME STRATEGIES THAT SEEM TO
MAKE SENSE AND ALTHOUGH IT'S -- YOU ALWAYS
HAVE TO BE CAREFUL ABOUT GENERALIZEING A LOT, I
THINK THERE WERE SOME REALLY DOMINANT THEMES
AND MICHELLE WENT THROUGH MANY OF THEM, AND I
THINK THAT IT'S OKAY TO USE THOSE AS A WAY TO
SAY THAT, YOU KNOW, RESEARCH -- EVEN RESEARCH
IS STARTING TO SHOW THAT THIS IS AN IMPORTANT
THING AND WE NEED TO LOOK AT IT.
WITH KNOWLEDGE THERE IS SOME AMMUNITION AND
SOME POWER AND THAT'S THE REASON WE DO THE
RESEARCH.
BECAUSE WE REALLY THINK THAT IF WE'VE GOT
INFORMATION TO STAND BEHIND US, THAT IT'S EASIER
TO COMMUNICATE FOR IMPROVEMENTS THAT NEED TO
BE DONE.

>> RACHEL:  ALONG THOSE LINES, WE SAID A COUPLE
OF PEOPLE WHO ARE INTERESTED IN BEING ABLE TO
ACCESS THE RESEARCH FINDINGS, IS THE WEBSITE YOU
LISTED OR ARE YOU GOING TO HAVE IT PUBLISHED
SOMEWHERE ELSE?
THEY WANT TO KNOW WHERE THEY CAN READ ABOUT
THE RESEARCH AND SOME INTEREST IN BEING ABLE TO
ACCESS SOME OF THOSE QUOTES.

>> MICHELLE:  THIS IS MICHELLE.
WE'VE WRITTEN THIS UP AS AN ARTICLE AND WE'VE
SUBMITTED IT TO THE JOURNAL OF REHABILITATION.
WE ALSO HAVE -- AND THAT WILL TAKE AWHILE TO
ACTUALLY COME OUT THOUGH.
WE HAVE THE ISSUE BRIEF ON THE ILRU WEBSITE
THAT'S ABOUT THIS.
LAURIE, DO WE HAVE ANYTHING ON THE RRTC
WEBSITE?

>> LAURIE:  WE HAVE THE ISSUE BRIEF ON THE RRTC
WEBSITE.

>> RACHEL:  CAN YOU GUYS GIVE OUT THAT WEBSITE
AGAIN?

>> MICHELLE:  THE ADDRESS IS
WWW.HEALTHWELLNESS, THAT'S ONE WORD,.ORG.

>> RACHEL:  GROUP PROJECT TO GET THAT WEBSITE
OUT.

>> MICHELLE:  ACTUALLY, I'M GOING TO HAVE TO STEP
OUT AT THIS TIME.
I HAVE TO GO TEACH A CLASS, BUT IT WAS GOOD TO
PARTICIPATE AND I THANK YOU ALL FOR LISTENING
AND I'LL BE IN TOUCH LATER.

>> RACHEL:  THANK YOU, MICHELLE.

>> MICHELLE:  YOU'RE WELCOME.
BYE-BYE.

>> LAURIE:  I THINK THAT IF THERE IS SOMEBODY ON
THE CALL WHO IS REALLY INTERESTED AND WOULD
LIKE TO HAVE KIND OF A PREPUBLICATION DRAFT OF
THE ARTICLE AND YOU PROMISE NOT TO MAIL IT TO 30
OF YOUR FRIENDS, WE WOULD -- WE'D BE PLEASED TO
PROVIDE THAT, MICHELLE OR I.

>> RACHEL:  OKAY, GREAT.
AND AGAIN, LISTENERS, YOU CAN ACCESS THIS
INFORMATION OR IF YOU HAVE FOLLOW-UP QUESTIONS
BY E-MAILING ILRU.
YOU CAN USE THAT WEBCAST AT ILRU.ORG E-MAIL
ADDRESS.
AND THAT CONCLUDES THE --
>> LAUREL:  I'VE GOT A COUPLE OF QUESTIONS.

>> RACHEL:  THE QUESTIONS I'VE GOT IN OVER HERE.

>> LAUREL:  LAURIE, THIS IS LAUREL RICHARDS.

>> LAURIE:  HI, LAUREL.

>> LAUREL:  I WONDER IF YOU CAN KIND OF SET THE
STAGE FOR US WITH REGARD TO THE STUDY VIS-A-VIS
OTHER SIMILAR STUDIES THAT HAVE BEEN
CONDUCTED ALONG THESE LINES?
PARTICULARLY -- MAYBE NOT WITH REGARD TO THE
HEALTH AND WELLNESS AS SEEN BY PEOPLE WITH
DISABILITIES, BUT MAYBE OTHER STUDIES WITH
REGARD TO HEALTH AND WELLNESS AND DISABILITY.
HAVE OTHER STUDIES BEEN CONDUCTED?
ARE THE FINDINGS SIMILAR?
DO THE PROFESSIONALS PERSPECTIVE OF HEALTH AND
WELLNESS AND PEOPLE WITH DISABILITIES, YOU
KNOW, CONFORM OR ARE THEY CON GREW ENT WITH
WHAT YOU ALL FOUND?

>> LAURIE:  WELL, WHAT'S INTERESTING, AND
MICHELLE ALLUDED TO IT A LITTLE BIT IN THE VERY
BEGINNING, IS THAT ACTUALLY THERE HASN'T BEEN A
LOT OF RESEARCH DONE ON -- PARTICULARLY ON
WHAT PEOPLE WITH DISABILITIES THINK OF THEIR OWN
HEALTH AND WELLNESS.
THERE HAS BEEN A LOT OF RESEARCH DONE ON HOW
TO ASSIST PEOPLE WITH DISABILITIES TO CHANGE
THEIR BEHAVIOR, TO BE MORE HEALTHY OR TO
EXERCISE OR TO DO SOMETHING LIKE THAT, BUT
THERE HASN'T BEEN A LOT OF RESEARCH, AND THE
STUDIES THAT HAVE BEEN DONE I THINK DO HAVE
SOME SIMILAR FINDINGS TO THESE STUDIES.
I DON'T THINK THAT THERE IS ANYTHING THAT POPPED
UP FOR US THAT CONFLICTED WITH THOSE STUDIES,
BUT I THINK TO DATE THIS IS PROBABLY THE MOST
DETAILED LOOK AT THE AREA.
SO THERE ARE PROBABLY SOME THEMES THAT CAME
UP IN THIS STUDY THAT HADN'T BEEN DISCUSSED
BEFORE.
SO NOT A DIFFERENCE BETWEEN THEM, BUT SOME
ADDITIONAL ISSUES OR MAYBE SOME CLARIFICATION,
ESPECIALLY LOOKING AT THESE KIND OF THE
CONTEXTUAL ISSUES.


>> LAUREL:  IN FACT, SOMEWHAT SELF-VALIDATING
BACK AND FORTH I SUSPECT.

I KNOW YOU'RE GOING TO BE DOING A FOLLOW-UP
STUDY, BUT IT WILL BE A DIFFERENT STUDY WITH
REGARD TO THE SURVEY OF 300 PEOPLE.
ARE YOU ASKING SIMILAR QUESTIONS I PRESUME?
IS THAT PEN AND PAPER TYPE SURVEY?

>> LAURIE:  YES.

>> LAUREL:  PRESUMABLY YOU'LL BE ASKING SIMILAR
QUESTIONS ABOUT THEIR PARTICULAR PERSPECTIVE
OF HEALTH AND WELLNESS AND FACILITATORS AND
BARRIERS?

>> LAURIE:  YES, YES.
AND WE'RE GOING TO BE ASKING ABOUT THE VARIOUS
FACTORS THAT WERE IDENTIFIED AS IMPORTANT IN
THIS STUDY AND THE EXTENT TO WHICH THE PEOPLE
WHO DO THE SURVEY SAY THAT THEY'VE HAD THAT
EXPERIENCE AND THE EXTENT TO WHICH THEY THINK
IT IS IMPORTANT AND WE'RE GOING TO ASK THEM
SOME QUESTIONS ABOUT THEIR OWN HEALTH AND
WE'RE GOING TO SEE IF THERE IS NOT A RELATIONSHIP
BETWEEN THEIR SAYING THEY'VE HAD PARTICULAR
KINDS OF EXPERIENCES THAT HELPED THEIR HEALTH
AND THEIR REPORTING FEELING HEALTHIER.
SO WE WANT TO TRY TO LOOK AT WHETHER WE CAN
MAKE A CONNECTION LIKE BETWEEN ISSUES --
BETWEEN FACTORS LIKE ACCOUNTABILITY OR
GETTING ACCOMMODATIONS AND PEOPLE ACTUALLY
REPORTING THAT THEY'RE HEALTHIER.

>> LAUREL:  OH, GOLLY.
THAT WILL BE -- IS THAT SCHEDULED FOR THE NEXT
COUPLE OF YEARS?

>> LAURIE:  YES.

>> LAUREL:  AND NATIONWIDE?

>> LAURIE:  YEAH, WE LIKE TO GET A BROAD SAMPLE
OF FOLKS.
IF THERE ARE PEOPLE ON THE WEBCAST WHO WOULD
BE INTERESTED IN PARTICIPATING IN THIS KIND OF
SURVEY, YOU CAN E-MAIL YOUR CONTACT
INFORMATION AND WE'D BE GLAD TO KEEP YOU
UPDATED.

>> LAUREL:  TRULY.
AND REAL QUICKLY, ON THE BRIEF YOU TALKED
ABOUT, IS THAT WHAT THE HANDOUT IS THAT'S
INCLUDED WITH THE PRESENTERS MATERIALS?

>> LAURIE:  YES.

>> LAUREL:  THAT'S LIKE A BRIEF OF THE FINDINGS?

>> LAURIE:  YEAH, ABOUT A SEVEN OR EIGHT PAGE
OVERVIEW, AND IT DOESN'T HAVE A LOT OF THE
QUOTES THAT MICHELLE WENT THROUGH AND THAT'S
WHY I OFFERED THAT IF SOMEBODY WOULD REALLY
LIKE TO TAKE A LOOK AT THE PREPUBLICATION MAN
UE SCRIPT WE'D BE GLAD TO SHARE THAT.

>> LAUREL:  WOULD YOU AUTO GRAPH THAT?

>> LAURIE:  NO, NO, YOU'D NEVER READ OUR WRITING
ANY WAY.

>> RACHEL:  WE HAVE AN 11TH HOUR QUESTION THAT
CAME IN IF I CAN INTERJECT THIS ONE.
IT STARTS OUT WITH THIS IS A WONDERFUL STUDY.

>> LAUREL:  THAT'S TRUE.

>> RACHEL:  AND IT GOES ON THAT PERHAPS IT SEEMS
YOUR SAMPLE WAS MADE UP OF LARGELY
SELF-DIRECTING INDIVIDUALS.
DID YOU LEARN ANYTHING ABOUT THEIR NEEDS FOR
PERSONAL ASSISTANCE SERVICES AND COULD YOU
DETERMINE ANY EFFECTS REGARDING THE
RELATIONSHIP BETWEEN SELF-DETERMINATION AND A
SENSE OF WELL-BEING?

>> LAURIE:  WELL, SELF-DETERMINATION WAS ONE OF
THE, I BELIEVE, FOUR MAJOR THEMES THAT WE CAME
UP WITH AROUND DEFINING HEALTH AND WELLNESS.
SO SELF-DETERMINATION AND THE WAY WE WERE
DESCRIBING IT IN THE STUDY WAS REALLY
IDENTIFYING GOALS, DIRECTING YOUR LIFE, DECIDING
WHAT YOU WANT AND GOING FOR IT.
SELF-DETERMINATION IN THAT CONTEXT WAS
DEFINITELY A VERY, A VERY STRONG THEME.
CAN YOU REPEAT THE FIRST PART OF THAT AGAIN?

>> RACHEL:  SURE.
IT SEEMS THAT PERHAPS YOUR SAMPLE WAS MADE UP
OF LARGELY SELF-DIRECTING INDIVIDUALS.
AND THEN DID YOU LEARN ANYTHING ABOUT THEIR
NEEDS FOR PERSONAL ASSISTANCE SERVICES.

>> LAURIE:  YEAH.
ACTUALLY, MICHELLE -- IT WAS ONE OF THOSE AREAS
THAT MICHELLE DIDN'T HAVE AN OPPORTUNITY TO
TALK TO, BUT CERTAINLY ACCESS TO PERSONAL
ASSISTANCE SERVICES WAS ONE OF THE IMPORTANT
ISSUES THAT CAME UP AND WITH FOLKS SAYING THAT
THAT IS OBVIOUSLY JUST CRITICAL FOR BEING ABLE TO
BOTH MAINTAIN THEIR HEALTH FROM A MANAGEMENT
POINT OF VIEW, BUT ALSO EVEN MORE IMPORTANTLY
TO BE ABLE TO FUNCTION AND GET OUT AND WORK
AND DO ALL THE OTHER THINGS THEY WANTED TO DO
IN THEIR LIVES, AND SOME OF THE BARRIERS THAT WE
ALL KNOW ABOUT WITH RESPECT TO HIRING AND
FIRING AND PROVIDER WAGES AND THOSE KINDS OF
THINGS WERE BROUGHT UP AS BARRIERS AND WERE
ASSOCIATED WITH HEALTH AND WELLNESS.


>> RACHEL:  GREAT.
THANK YOU.
GLAD WE GOT TO GET THAT ONE IN UNDER THE WIRE.

>> LAURIE:  YEAH.
AND THAT WILL BE ON THE SURVEY.

>> LAUREL:  YOU KNOW, LAURIE, REGARDING THIS
STUDY THAT YOU JUST DID, I KNOW PROBABLY
EVERYBODY WHO LISTENS TO IT HAS A WISH LIST OF
WHAT THEY'D LIKE TO SEE IF YOU HAD ANOTHER GO
THROUGH.
AND I'M SORRY MICHELLE IS NOT ON THE LINE, BUT I'M
WONDERING IF YOU COULD -- IF YOU HAD IN ADVANCE
HAD THOUGHT OF IT, DO YOU RECKON THAT THE
RESPONSES OF PEOPLE WHO ARE OLDER, I MEAN LIKE --
I DON'T CONSIDER 55 OLDER.
SO I WANT -- GUESS WHO IS GETTING CLOSE TO 55.
DO YOU THINK PEOPLE WHO ARE RETIRED OR EVEN
OLDER WOULD HAVE DIFFERENT RESPONSES TO HOW
THEY DEFINE HEALTH OR WHAT THEY RECOGNIZE AS
BARRIERS OR WHAT CHANGES THEY WOULD WANT TO
INTRODUCE IN THEIR LIVES TO PROMOTE HEALTH.
AND IF THEY BE DIFFERENT ARE THERE THINGS WE
CAN LEARN TO START PREPARING FOR FOLKS TO LIVE
MORE INDEPENDENTLY OUTSIDE INSTITUTIONAL
LIVING?

>> LAURIE:  WELL, I WOULD SAY THAT PROBABLY THE
THING ABOUT HEALTH AND OLDER PERSONS THAT I
LEARNED MOST FROM THIS STUDY IS THAT WE REALLY
NEED TO DO ANOTHER STUDY JUST LIKE THIS AND WE
NEED TO HAVE EVERY PARTICIPANT IN IT BE OVER 60
AND REALLY, REALLY GET A CHANCE TO GIVE VOICE
TO ELDERS AROUND THIS ISSUE.
BECAUSE I THINK THAT THERE ARE DIFFERENCES.
IT'S TOUGH FOR US WITH THIS STUDY TO BE ABLE TO
MAKE MUCH IN THE WAY OF GENERALIZATION.
WE CERTAINLY -- YOU KNOW, I'M THINKING AMONG
SOME OF THE OLDER OF THE OLDER PARTICIPANTS,
THAT JUST THE WHOLE CONCEPT OF DISABILITY AND
WELLNESS AND YOU'VE GOT ALL THESE OTHER KIND
OF SYMPTOMS AND AILMENTS THAT KIND OF START TO
EMERGE AS YOU GET OLDER AND SO THERE IS THAT
DEFINITIONAL DIFFERENCE OF, WELL, DO I HAVE A
DISABILITY OR I'M JUST OLD?
THERE IS THAT -- CERTAINLY THAT ISSUE CAME UP
AND KIND OF ALONG WITH THAT, YOU KNOW, THE
EXTENT TO WHICH IN A SENSE I HAVE A CLAIMED
HEALTH AND WELLNESS, KIND OF THE EXTENT TO
WHICH THIS IS SOMETHING THAT I JUST KIND OF HAVE
TO LIVE WITH BECAUSE IT'S TO BE EXPECTED VERSUS
SOMETHING THAT MAYBE I CAN HAVE SOME CONTROL
OVER AND DO SOMETHING WITH.
BUT, YOU KNOW, I THROW THOSE OUT, BUT I
CERTAINLY WOULDN'T WANT TO SAY THAT -- THAT
THAT WOULD BE SOMETHING THAT WE WOULD HEAR
FROM THE MAJORITY OF FOLKS.
I THINK WE JUST REALLY NEED TO DO MORE WORK TO
GIVE MORE RESEARCH AND MORE INTERVENTION,
MORE ACTIVITIES WITH OLDER FOLKS WITH
DISABILITIES TO REALLY, REALLY GIVE THEM MORE
VOICE AND OPPORTUNITY.

>> LAUREL:  WE'RE HALF WONDERING IF THE -- WE
KNOW THAT YOUNGER FOLKS WHO ARE IN NURSING
HOMES OR INSTITUTIONS WILL BE AFFECTED BY THE
OLMSTED DECISION AND OPPORTUNITIES TO LIVE OUT
IN THE COMMUNITY AND WE'RE JUST WONDERING
DOWN HERE IF FOLKS WHO ARE MUCH OLDER BUT
ONLY NEED MODEST ASSISTANCE AND THEY CAN LIVE
IN THE INDEPENDENT LIVING COMMUNITY AS WELL.
I DON'T KNOW THAT WE KNOW SO MUCH ASPECTS AS
THEIR WAY OF LIFE AND THE HEALTH AND WELLNESS
INITIATIVES.

>> LAURIE:  I DON'T THINK WE REALLY HAVE A GOOD
SENSE OF PERSONAL ASSISTANCE SERVICES AND HOW
THAT ALL WORKS.

>> LAUREL:  I HAVE ONE MORE BEFORE WE CLOSE.
WHEN YOU WERE TALKING ABOUT, YOU KNOW, THE
IMPLICATIONS OF THIS RESEARCH, IT REMINDED ME OF
SOME OF THE CORE SERVICES THAT I HADEN LIVING
CENTERS PROVIDE, SUCH AS I SUSPECT THE NUMBER
OF PEER COUNSELING OR SUPPORTS GROUPS WOULD
NOT BE ASTONISHED BY THE ISSUES THAT WERE
RAISED IN YOUR RESEARCH AND WITH YOUR
PARTICIPANTS, BUT I THINK THE POINT YOU WERE
MAKING IS THAT BY DOING IT AS PART OF RESEARCH
AND TRAINING CENTER AND WITH THIS STRUCTURE
THAT YOU OVERLAID THAT THERE IS A VALIDATION
ISSUE OF THESE POINTS THAT OTHER PEOPLE ARE
HEARING ANECDOTALLY AND THAT THE RESEARCH
CAN BE USED NOT JUST TO VALIDATE SERVICES THAT
CENTERS MIGHT WANT TO PROVIDE, BUT ALSO TO DO
ADVOCACY ACTIVITIES.

>> LAURIE:  YEAH, AND TO PROVIDE INFORMATION TO
OTHER PARTICIPANTS, OTHER PARTNERS OR
STAKEHOLDERS IN THE SYSTEM THAT WILL MAYBE
HELP THEM TO BETTER UNDERSTAND THESE ISSUES.

>> LAUREL:  AND I THINK IT'S CLEAR THAT IF ONE WAS
GOING TO DEVELOP AN INDEPENDENT LIVING SKILLS
TRAINING PROGRAM ON IMPROVING HEALTH AND
WELLNESS, YOU HAVE THROUGH THIS FORMALLY
IDENTIFIED ISSUE THAT IS NEED TO BE ADDRESSED
WITH REGARD TO BECOMING -- TO ASPECTS OF LIFE
THAT ONE MIGHT WANT TO IMPROVE OR WORK ONTO
HAVE A SENSE OF HEALTHYNESS AND WELLNESS.

>> LAURIE:  YEAH, AND THERE ARE CERTAINLY -- I
MEAN THERE IS THE BEGINS OF SOME REALLY
EXCITING I THINK MATERIALS THAT ARE EMERGING
THROUGH THE RRTC IN MONTANA AND WE'VE GOT A
DISABLED AND HEALTHY CURRICULUM OF MATERIALS
HERE AT OUR CENTER AND INSTITUTE AS WELL.

>> LAUREL:  AS A MATTER OF FACT, JUST AS ASIDE
COMMERCIAL, I BELIEVE IN THIS UPCOMING YEAR
WE'LL BE USING THAT AS A BASIS FOR CONDUCTING AN
ON LINE COURSE FOR, I DON'T KNOW, PEOPLE WORKING
IN THE INDEPENDENT LIVING FIELD, DISABILITY RIGHTS
FIELD, OTHER SERVICE ORGANIZATIONS THAT MIGHT
WANT TO HAVE PEOPLE ON STAFF WHO COULD
FACILITATE GROUPS SUCH AS INDEPENDENT LIVING
SKILLS TRAINING GROUPS OR EVEN CONSUMERS
THEMSELVES IN LEARNING HOW TO BE -- TAKE CHARGE
OF HEALTH AND WELLNESS OF THEIR OWN.

ARE THERE OTHER -- RACHEL, ARE THERE OTHER
QUESTIONS WE NEED TO ADDRESS BEFORE WE CLOSE?

>> RACHEL:  NO.
YOU GUYS DID A GREAT JOB OF ADDRESSING ALL THE
QUESTIONS THAT WE DID GET IN THROUGH E-MAIL.
SO THANK YOU.

>> LAUREL:  LAURIE, IS THERE MORE OR CAN I GO INTO
MY HARD SELL OF THE NEXT WEBCAST COMING UP?

>> LAURIE:  NO, GO FOR IT AND THANKS TO
EVERYBODY FOR BEING ON THE CALL.

>> LAUREL:  THANK YOU.

>> RACHEL:  THANK YOU.

>> LAUREL:  WE WANT TO CLOSE HERE, BUT I WANT TO
JUST TAKE A MOMENT AGAIN TO REPEAT OUR
APPRECIATION AND ILRU'S FOR NIDRR'S SUPPORT OF
THESE KINDS OF INITIATIVES WHERE WE CAN PROVIDE
TO STAKEHOLDERS WHO AREN'T RESEARCHERS
FINDINGS THAT AFFECT OUR LIVES THAT ARE BEING
DONE BY RESEARCH PROGRAMS AND RESEARCHERS IN
THE FIELD.

ALSO, WE WANT TO REMIND YOU THAT THERE IS A
DATABASE ON THE RESEARCH FOR INFORMATION ON
INDEPENDENT LIVING WEBSITE, THAT'S GETRIIL,
WHERE THERE ARE ABSTRACTS OF STUDIES OF
RESEARCH PROJECTS THAT HAVE BEEN CONDUCTED,
AND I BELIEVE THERE IS SEVERAL HUNDRED, IF NOT
OVER SIX TO EIGHT HUNDRED STUDIES THERE ON LINE
NOW THAT ARE SEARCHABLE, AND IF YOU HAVE AN
INTEREST IN THIS AREA AND WOULD LIKE TO DO SOME
FOLLOW UP READING, IT'S A TERRIFIC SOURCE FOR
THAT.

THIS PRESENTATION, BY THE WAY, WILL BE ARCHIVED
ALONG WITH THE OTHER PRESENTATIONS IN THIS
WEBCAST SERIES AND IT WILL BE ARCHIVED IN BOTH
THE AUDIO AS WELL AS A TRANSCRIPT OF THE
CAPTIONING SO THAT IF YOU CARE TO -- IF YOU KNOW
OF FOLKS WHO MIGHT BE INTERESTED AND THEY
WOULD LIKE TO HEAR IT AGAIN, WE'LL HAVE ON THIS
SITE WE'LL HAVE THE AUDIO, THE TRANSCRIPT, THE
HANDOUT MATERIALS AND SO FORTH.

THE NEXT PRESENTATION THAT WE HAVE WILL BE
NEXT WEEK, DECEMBER 5.
WENDY WILKINSON WILL PRESENT ON HEALTH CARE
DISABILITY AND THE ADA AS WELL AS SECTION 504 OF
THE REHABILITATION ACT.
AND WE INVITE YOU TO THAT.
THE NEXT WEEK, CRAIG RAVES LOOT WITH THE RURAL
TRAINING CENTER IN MONTANA WILL PRESENT ON
MANAGED CARE ISSUES PERTAINING TO FOLKS WHO
LIVING IN RURAL AREAS.
AND WE CERTAINLY INVITE YOU TO ATTEND BOTH OF
THESE.
WE THINK WE'RE GOING TO BE FIRST RATE.

AND FINALLY, I'D LIKE TO ACKNOWLEDGE OUR TEAM
HERE IN HOUSTON WHO MAKE THIS WEBCAST
POSSIBLE.
AND THAT INCLUDES ROB DICKEHUTH WHO IS WITH
BAYLOR COLLEGE OF MEDICINE, AND MARIE BRYANT
WHO IS OUR CAPTIONER.
IT ALSO INCLUDES ILRU STAFF MEMBERS, MARJ
GORDON, SHARON FINNEY WHO IS ALSO A MEMBER OF
THE STUDY THAT LAURIE AND MICHELLE REPORTED
ON, RACHEL KOSOY WHO IS OUR QUESTIONER WHO
TALKS SO SLOWLY AND CLEARLY AND DAWN
HEINSOHN.
NOW, THE ONE LAST THING I HAVE TO MENTION IS IT'S
KIND OF APPEAL TO ALL OF YOU WHO HAVE -- WORK
OFF GRANTS AND YOU KNOW THAT ONE OF OUR
OBLIGATIONS IS TO REPORT BACK ON -- PROVIDE DATA
TO THE GRANTEES -- GRANTORS ON USAGE.
WE HAVE THIS EVALUATION FORM.
IT'S DELIBERATELY KEPT SHORT, BUT VERY SPECIFIC
AND PITHY AND WE WOULD LIKE YOU TO COMPLETE
THAT IF YOU WOULD BE SO KIND.
AND THEN WE CAN REPORT BACK TO THE FEDS THAT
SO MANY PEOPLE LOVED IT AND SO MANY PEOPLE,
YOU KNOW, WOULD LIKE TO HEAR MORE.
AND THEN WE CAN MODERATE THE ONES THAT SAY
THAT THEY WOULD PASS NEXT TIME IF ANY.

SO WE WOULD REQUEST YOUR HELP WITH DOING THIS
REPORTING, AND FINALLY, WE WANT TO THANK AGAIN
MICHELLE WHO HAD TO LEAVE AND LAURIE POWERS
FOR A TERRIFIC PRESENTATION, LAURIE.
AND I WANT TO THANK ALL OF YOU FOR
PARTICIPATING WITH US TODAY AND JUST WANT TO
SAY RIGHT NOW GOOD AFTERNOON AND WE'LL SEE
YOU NEXT WEEK.